On a rant - Sure, go ahead and make some remark to make it oh-so-much-better...And I cannot be held responsible for my reciprocal actions! grrrrrr!! I'm tired of all of THAT crap! I come here to "get away" when it has been a bad day. I come here when it has been a good day. I come here to ask for solutions and suggestions (I am not an M.D.). I come here to help others (when I can) and if not, well, I will feel compassion for them and offer support/my sympathy/ or a "funny" to offer escape and a break from the bleakness. I think that is why so many people come here; To remind themselves that they are not the only one dealing with the scourge of this horrid disease.

I am a good caretaker. I'm 99.9% certain that NO ONE could do better with taking care of my Mother. I am her advocate with the M.D. and now with the pharmacy. I am fastidious with her cleanliness, meticulous with her medications and I am careful, she is after all, my Mother and I love her. I promised both parents (and again just before he passed, I promised Dad) that I would take care of them...After all...I've been "taking care" of them to some extent my whole life...I'm the "problem solver, the one who will deal with the problem, the bad cop (when necessary)"...That's just me. I have these broad shoulders which are capable of holding "the weight of the world" and then, shrugging it off to go on with the next situation...

But NOW...Well...I'm totally frustrated at this point.

Mom is fighting me on EVERYTHING! I stand her up, she pushes herself back so that I have to pull her forward or she will fall. My back is hurting all of the time... She gets a death grip on each and every available door frame/ towel rack/ door handle/ sink top/ or my arms or wrist to the point where I literally have to pry her loose. When I brush her teeth, she spits at me and gags, which grosses me out...When I try to feed her, IF she wants to eat, she will take about half and then say "no more". IF she does not want to eat (most of the time) she will spit it all back out, wipe it on the tablecloth (even with a napkin in her hand) or worse, will spit it at me. I just hate this disease. IF this is regression, God, she must have been an awful, spiteful child!

What to do? What to do? I guess I'm just tired, yep, I'm human, we get tired. Condemn me for that it you must, but some days are just unbearable!

Washing, washing, washing...I'm so very tired of pee! It invades my every thought, I think I smell it everywhere and no matter how often I steam the carpets, no matter what I use on the mattress, I still think I smell it.

On and on I go... So sorry...Just so much on my mind...

Cinmin:

I don't know if it's any consolation. But I think you are a good care-giver. You acknowledge your frustration. And you deal with it. You recognize shortcomings. And you try to fix 'em. One way or another. Seems to me you are doing what you are supposed to be doing. You are defining your problems. And then you are looking for solutions -- ways to deal with 'em. In ways that are kind to your patient. I think you'll pull through quite well. --Jim

(((Cinmin))), I feel your pain. Mom hasn't wiped her face or hands on the tablecloth - probably because I do not have one on the table!!

The death grip we have to pry loose is hard especially if your trying to hold them up. I try to get her to put her arms around my neck but sometimes she will re-grab the bsc wheelchair whatever. I know she is afraid of falling.

Mom doesn't spit stuff out or at me yet but she loves to drop it on the floor. It's almost like a kid with a dog under the table and the kid feeding it what it doesn't want to eat. Oh, by the way... we have no dog!!

Late afternoon - evening is the worst. She gets so upset. Says I am treating her bad and she is calling the cops.

The urine - ahhh yes. On my arm, on my foot, in her depends, in the bed. The smell doesn't seem to ever go away. I clean it all up take a shower and when I go to bed I still smell it.

Hang in there and it's perfectly okay to be tired and vent. We are only human.

Cinmin....

Okay! I will not try to convince you to not be frustrated anymore!

What I will try to convince you of....is that these things happen to me also!

When you do your best and that ain't good enough...what the heck are ya suppose to do?!?

I would be happy to share with you what has worked for me if you wish! I will also be glad to inform you of what doesn't work!

((((HUGS))))

[quote]When you do your best and that ain't good enough...what the heck are ya suppose to do?!?[/quote]


Love this!

Took a while. But I finally mastered the art of poop and pee clean-up. So that there was no lingering smell. So many ways to freshen the air. The important thing is to get right at it. When I got married I took on a ready-made family. I thought that I had evaded for a lifetime any need to deal with diapering. Well, it didn't quite work out that way. Because of Alzheimer's. But hey, an old dog can still learn new tricks. I even surprised myself. --Jim

Just a couple of thoughts...

The leaning back thing... my stepmom's PT explained this. Evidently AD affects their spacial perceptions and they feel that the floor is a MILE away and fear that they may fall, they can't really realize where upright is, so they lean back to avoid the potential fall... which usually results in a fall... the opposite of the intended effect. There's really not a lot that you can do about it unless you can get them to forget down and to look at you. But I can't get that to happen all the time. :/ But I've noticed that ALL the PTs that have worked with dad or my stepmom have always tried to get them to lock their eyes on theirs.

The "death grip". Ohhh I know it WELL! Dad's been in a wheelchair about a year now and he can death grip anything (including my clothes ) and brace so strongly against me that I can't transfer him. I've been trying to get around this for the last year and it's not easy. Even the PT said that "He's just gonna be a DIFFICULT transfer". So... the only ONLY way I can accomplish ANY move with my dad is to give it plenty of time. It takes less time to fully dress him (I have to do it with him in bed now) than it takes to transfer him if he's in a real strong bracing mood. I just take it as slowly as I can... gently get him to release his grip (gently, because any sudden movement or forceful move will cause him to double his efforts) and try to reposition his hand on me somewhere, usually my arm. By the way... the PT suggested NOT to have him hold onto the shoulder because he rarely keeps his hand put and he said "you don't want to lose an eye or suffer a broken neck or anything else he might accidentally do to you". True, I don't. Anyway, I just go slow and peel his hand off of things over and over and over until I get him moved. The transfer board is always fun because I constantly have to keep his hands from getting under it or pinched somehow by it.

Other than transfers to bed and wheelchairs, if we're doing shower for example, I have the bars for his hands and I place them on them so he feels that he has more control. You *might* want to check areas (like shower, toilet, etc) and make sure that you have secure rails or other "hand holds" that she can hold onto and try guiding where she holds on.

Feeding... My stepmom used to spit her food (if she wasn't throwing it). Two things helped me. The first was a very low dose of Risperdal, and the second was Bluebell Homemade Vanilla Ice Cream. The Risperdal is hopefully self explanatory. The ice cream... I basically BRIBE her to eat or behave. If she eats say... one of the three things on her plate and leaves the others on her plate for me to clean up... she gets ice cream for dessert. (Face it... I rarely have denied her ice cream, but it's the idea there. She doesn't know that I will give her ice cream if she DOESN'T eat anything... so she usually complies.)

As to the teeth brushing... it's all I can do to keep from getting bitten my dad when I brush his teeth so... I'm gonna have to beg out of suggestions for teeth.

NDuke:

I think you are an example of a very good care-giver. You've got what it takes. Patience. Kindness. Understanding. Did this come naturally? Or did you have to work at it? --Jim

Where my Dad lives I used to wonder why (I know now) the staff would hold their arms out and walk backward leading the patient, and the patient always seemed to be leaning back. But they had that death grip going on. They wouldn't let go and be in danger of a fall. But it always did worry me that the knees would buckle and the aid wasn't in the right position to catch them. They tell me this technique is only done with those who are still ambulatory even on their own, but don't follow instruction to follow.

cinimin: there are days I wake up and wonder why bother? Nothing seems to work...with mom even though she is medically incompetent she still retains legal and can go about and do whatever---so instead I get to sit around and wait for a true medical crisis situation for placement.
Mom's biggest scare is nursing home or seeing others in wheelchairs or worse. I feel in my heart of souls that if she ever were to get placed that she would die....she gets really hyper and anxiety is all over it. It is truly a shame. There aredays I feel like I'm a failure becuase I can't convince her that her water pills would help if she actually took them. Try explaining to someone that the script for 90 days means it should be over and done with in 90 days.....currently that script has lasted since 3.27=07 and as of last Saturday still had a whopping 152 pills remaining....if you discuss it long enough she will tell you that she doesn't like them and they don't work. When she was more coherent about it all they did work---it's just been lately. Yes I've done all the boxes and set them in order---still nothing---just more confusion...plus after that you get to wait hours upon hours becuase she doesn't like to mix "drugs" in her system that way the one she took will know what to do.....it can take upwards of 5 hours + to get her to take 4 prescritions....I can see the medication on her counter and know she hasn't taken it----yet she will argue that she already has....sometimes I can get her to admit she isn't taking them because they don't work but even that arguement is fruital....
I am also considered bad for mom becuase of the time I have put in for her....becasue others don't (major issues with mom cloud their perspectives of helping) --- so to help elevate their guilt easier to say Karen at fault. that is the only thing I can figure out.
recently been told that due to all the inhouse fighting between me and sibs that is the reason bro doesn't come buy....I did tell others that I left weekends wide open along with supplying chores that he could do for mom----but still nothing....

I have had a major caregiver burnout since the mid of September and still hard to get focused back in on the caregiving routine. Since I'm the only one wthat will I know I need to do something. All the while I'm hearing how hard it is to see mom now that she is in such decline.....it hasn't been easy for me but something that you do----just been thru yet another round of kidney stones and such---during this I kept getting asked if I was going to visit mom....there were some nights I maybe got only 1 hour of sleep...I said no...finally after a week 1/2 someone decided perhaps mom would need some groceries. All visits made to mom are quick and to the point....heaven forbid it should be a long visit of at least an 1 hour---oh no they have to return to their lives....
Caregiver burnout is still with me and I'm trying to work thru it. After being told how truly limitted I am with her care I'm at a point of why bohter? If I take her in she can refuse whatever--she needs to use a walker yet won't--her walking is so very unsteady--even my kids won't go in first----they are afraid of finding grandma on the floor....this disease is so hard and seems to go on forever......it truly is a horrid disease! Hate it....oh yeah also get that wonerful violent, anger,rage and self pity on her part....the times she wants her car back she uses very colorful language that when I was a youngster my mouth would be a living bar of soap.....
my sibs don't get it, my mom's sister doesn't get it (she still believes everything mom tells her...., I am the only one htat get it and my daughtes.....its hard to need help and others ask "why" when its so very plain

As one "Honorary Texan" to another ( I went to school there & love the state!), I have to say that I admire all you do. My parents haven't gotten to this stage yet & sometimes I wonder if I'll be able to handle it. But then I read the messages here & realize that it's difficult but doable.

You vent your frustrations here because this is the place to do so. You're a good daughter so you're not going to vent at your mom. Instead, you make the effort to come here and let go. That helps the rest of us understand what goes on during this process when dealing with our LO.

I haven't explained myself very well here. What I really want to say is that you are a teacher for those of us who are not quite so far along the path. We learn what to expect and we learn that it's OK to have bad days and to appreciate the good days. Thank you!

I can't begin to fully understand what a fulltime in-home caretaker deals with all that you have. My MIL is in an ALF and we are continually frustrated with her. We don't have the 24 hour on-duty experience that you have. So I can't offer much advice....only empathy. I'm not sure who started the notion that no one should ever be frustrated or angry. I think that those emotions are the hallmark of the disease.

So please feel free to vent. This is the place to do it. I fear if I didn't have this forum I wouldn't be very kind to MIL. This is my pressure release.

Cinmin,
Boy do I know the death grip!!!!!!!! BF's Mom may look frail and fragile (I swear that is the french word for strong!) but oh my heavens can she ever latch on..

One time I was trying to take ther to teh ER because she was showing signs of severe dehydration and malnutrition brought on by UTI. She latched on to the bed rails and wouldn't let go for love or money. I eventually had to call the EMT's to transport and even then it took 4 (count them 4) big strong men to get ehr to let go of the bed rail so they could transfer her to a gurney and get her out of the house.

One way I have eleminated the death grip is when I get ready to transfer her or stand her up for any reason. I roll up 2 face towels (wash clothes) and put one in each hand. Then I move her around, she can squeeze the bajeebers out the clothes and I no longer have scratches or bruised body parts and her hands are full so she can't latch on to the wheelchair arms, door frames, potty seat arms.. etc..

Of course I couldn't do that when she was using a walker, but she wasn't as bad then either.

AS far as venting.. that is ok too.. I think it's the pee smell that get to everyone at some point.. no matter how clean you keep things it just doesn't seem to go away.. does it?

Cinnminn,
I'm so sorry - believe me, I feel your pain. I don't know what stage your Mom is in - mine's in 6 - 7. One thing I figured out fairly recently about eating is this: Mom would shake her head NO about taking another bite, and of course we would continue to cajol and encourage her to continue eating... Well one day when Mom shook her head NO, I asked her why she didn't want her food and she said, "I'm afraid of it" well I thought how silly, why would you be afraid of food? And then it dawned on me SHE IS AFRAID OF SWALLOWING AND CHOKING - that's why she's telling me she's scared of her food all the time!! I thought what she was telling me were just the incoherent ramblings of an AD patient - But SHE WAS TRYING TO TELL ME SOMETHING AND I COULDN'T SEE IT

From that day forward I have never pushed food on my Mom. Could you imagine being in constant fear of choking !!! What she doesn't eat I make up for with lots of yogurt or ice creme or applesauce or whatever... Nutrition is not what is important now - her comfort is.

Try to get your Mom to drink Cranberry juice - it is a natural deoderizer of urine - it really helps!!
Hang in there,
Jane

"One way I have eleminated the death grip is when I get ready to transfer her or stand her up for any reason. I roll up 2 face towels (wash clothes) and put one in each hand. Then I move her around, she can squeeze the bajeebers out the clothes and I no longer have scratches or bruised body parts and her hands are full so she can't latch on to the wheelchair arms, door frames, potty seat arms.. etc..

Of course I couldn't do that when she was using a walker, but she wasn't as bad then either."

Ha ha! The towels! I used tennis balls for a while. Then he started realizing that with them he couldn't grab anything else and he won't even take them any more! Who said you can't teach an AD patient new tricks?

The walker! That reminded me! I used to, when dad was walking, use the walker for every transfer. I would stand him up and let him hold the walker, then slide the wheelchair under him... or turn him *just* a little... and seat him wherever with a gentle nudge or my hip against his! I think the walker STILL is trying to pop back to it's original shape from a year ago!
______

"NDuke:

I think you are an example of a very good care-giver. You've got what it takes. Patience. Kindness. Understanding. Did this come naturally? Or did you have to work at it? --Jim"

Baptism by fire, I think. It took a while to learn that with dementia, when *I* fight the situation with one of the parents I just make my job harder on ME. For a while even the WALLS got out of my way when I was frustrated. Fighting ANYTHING dementia related is like those kids' finger traps. Place an index finger in both ends and the harder you pull, the harder you have to pull and you never break free.

Ok Cin,,you go ahead and get it all out,,you need to,,you derserve to! We all know just how you feel,,and nobody would ever get mad about anything that you ,,or any of us post in regards to our LO's,,and if they do get upset,,oh well thats just TS,,they're in the wrong place then.

I'm sorry that you're having one of those horribley frustrating days,,,makes you want to run in the bathroom with favorite alcoholic beverage,,book, and fav cd & boom box in hand,,and just be left alone to soak it all away. Hey,,why don't you do just that,,let someone else "entertain" Mom while you "RELAX" for at least an hour of DO NOT DISTURB time. Is that possible???

Just take some deep breaths,,tomorrow is a new day,,,just try to make it thru this one my friend! Hugs & Peace.

[quote]The walker! That reminded me! I used to, when dad was walking, use the walker for every transfer. I would stand him up and let him hold the walker, then slide the wheelchair under him... or turn him *just* a little... and seat him wherever with a gentle nudge or my hip against his! I think the walker STILL is trying to pop back to it's original shape from a year ago![/quote]

OMG I used to do the same thing.. I used it for everything.. not just transfers.. Potty time wheel her into bathroom.. run grab walker, set walker in front of her, stand her up, gentle turn, pull her pants down, then let her sit down. Do business, stand her up (have her hold walker) clean her bottom, pull pants up, gentle turn have her sit down, fold walker up, set it to the side, wheel her back to her room, run get walker set it up in front of her, get her up gentle turn let her sit down..

Now about those towels, since she has had the mini stroke, she forgets she has one in her left hand sometimes and she tends to grip her hand into a fist real tight when she is aggitated.. so I try to leave it in that hand as much as possible to keep her nails from digging into her hand (can't keep those suckers short enough). It sort of kills 2 birds with one stone too.. no skin tears in the palm of her hand and no death grip.. LOL

What is that saying "Necessity is the mother of invention"!!! LOL

Ok Denise E... You have me convinced enough to at least TRY the towels. The only thing I use hand towels for these days anyway is to sit his bottom on the shower seat, and he has a special "laughing cow towel" for that.

Have I ever mentioned how much I LOVE bleach?

Thanks everyone!

I'm certainly going to try the hand towels!!

I use Mom's walker to get her transfered from one place to the next as well. She uses it to walk and it scares me as she is "listing to the left", walking in a marionette, bending her knees, walking on her toes, fashion, just add strings and she could be Pinocchio! What’s up with THAT?? She also tends to pull back which lifts the walker off the floor! Not good!

We are using her wheel chair more and more. This is a lot quicker than trying to get her to walk down the hall, to get to another room, and to sit at the table. She doesn't like the HARD dining room chairs and would sit (and sleep) in her recliner all day if I'd let her!

I’ve given up on the bathtub after she sat in the water, refusing to help me in any way get her up and out for over an hour – Dead weight at the bottom of the tub and then I couldn’t get her to lift her legs over the tub top…No more bathtub! This week, we have begun using an attachment in the shower with a shower chair. We both get soaked and she screams quite a bit! I’m sure the neighbor’s think I’m hurting her, when in reality, I’m rinsing her hair or trying to get her to “help” wash herself. I just don’t get it, why bathing is such a problem, but I refuse to let her go without getting a scrub – We have to breathe that air!

Bleach has become my best buddy as well!

Thanks for the encouragement and the suggestions...Most of all for just letting me talk it out!

Cinamin, Glad you came here to get your feelings out. You're doing a wonderful job and by coming here others have been able to give you a few tips on how to deal with the "death grip" so you're not getting hurt. Hope it works for you.

I'll keep you in my thoughts and prayers.

Vent away, Cin. This is the place to do that. ((HUGS))

"...She uses it to walk and it scares me as she is "listing to the left", walking in a marionette, bending her knees, walking on her toes, fashion, just add strings and she could be Pinocchio! What’s up with THAT?? She also tends to pull back which lifts the walker off the floor! Not good!"

It's possible that she's getting "contractures" and can't straighten her legs. Do you know if she can straighten her legs all the way when laying down? Or does she always keep her knees bent? If she can't straighten them and you haven't seen a physical therapist yet, see if her Dr will get home health to come do an assessment. It could be that she needs PT and the threrapist needs to train you in what to do.

Dad's going more and more into the fetal position and I didn't know how serious that could be. We only recently started to address his legs, and I realize now that the contractures started when he stopped walking. I can't tell you which is the chicken and which is the egg, but I do know that if you aren't familiar with them, you need to GET familiar with them and "range of motion" PT. The body can lock up over time to the point that you can't even get a pair of pull-ups past the knees or a thermometer under the arm.