Medical Forum / Diseases and Disorders / Alzheimer's / January 2006
It's always something....
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Florence A - 13 Dec 2005 03:16 GMT I got a call fro AL facility today. They set up an emergency appointment with (psych) DR for tomorrow. He was going to eat someone,s food who also eats at his table. I couldn't get all the details over the phone , It sounded as though they protested and an aid got into it and he went at them with his fork..Thiis is the 2nd incedent in the dining room. About 2 months ago he drank someones' juice.. I hope to get more details tomorrow. This was not taken lightly. I don't know what sets him off. He swung at an aid one other time. He is on Respiadol(sp) and seems happy enough .. Sings , walks around. Kind of knows me,sometimes. I can't figure why he is still continent but just can't find the toilet.
I plan on asking the Dr that "she" suggest he eat alone, perhaps by a window. to draw his attenion to the birds outdoors. I wonder if there is too much action with all eating together. The manager & RN want a family meeting Wed. This has me upset,,, I loathe to think of changiing places. And I do believe if they think they found a solution so much the better. If anyone has dealt with a similar situation please advise any solution..
I always take him to the dr and found her to be very nice---easy to talk with.
Florence
Gwen Love - 13 Dec 2005 03:59 GMT Florence, I hope you will find an answer to the problem, and it won't be as bad as you are dreading it to be! Gwen
>I got a call fro AL facility today. They set up an emergency > appointment with (psych) DR for tomorrow. He was going to eat [quoted text clipped - 22 lines] > > Florence MaryD - 13 Dec 2005 04:06 GMT >I got a call fro AL facility today. They set up an emergency > appointment with (psych) DR for tomorrow. He was going to eat [quoted text clipped - 9 lines] > window. to draw his attenion to the birds outdoors. > I wonder if there is too much action with all eating together. Florence, you hit the nail on the head. He is obviously confused by the commotion in the dining area - and he reacts to things like the aid intervening and people trying to take food away in the exact same manner that any of us would if some stranger was getting in our face trying to take food away.
It would be great if he could eat in a more peaceful area of the facility - suffest that to the director and the RN - hopefully the three of you can work something out.
BTW, am I correct in remembering that your husband is in a facility in Northern NJ? I live in this area, so if you'd like to email me privately, I can let you know if I have any insight specific to your ALF. :)
MaryD - m l daikos@ optonline . net Certfied Dementia Practitioner Director, NJ Alzheimer's Adult Day Care
michelle - 13 Dec 2005 09:31 GMT I am a carer and have seen this situation many times,I agree with you Florence and Mary D that the commotion over this happening would just add to your fathers frustration and make him angry. As to him he is doing nothing wrong. Is he trying to eat someone elses food when he has eaten his own? Similarly with the drink.If so perhaps he is still hungry.I realise this still isnt an acceptable reason for showing aggression but still something to consider.In the home I work in we have to assess this challenging behaviour and apply interventions that may improve the situation before any major change is implemented Risperdal. do these meds need adjusting?
Florence A - 13 Dec 2005 14:03 GMT I am assuming he must see the Dr to have the meds adjusted.
The AL facility usually sends an aid with the patient if a family member cannot make the appt. It seems to be the accepted way. However, I kind of imply I want to be there and so they accommodate.---though I must say---I think all real discussions have already been done over the phone. It's probably a CYA thing.
I insert myself into the whole thing. Perhaps this is not a good thing. I feel dammed if you do, dammed if you don't.
My husband has always been such a nice guy. The kids are planning on being at the "family" meeting tomorrow. They just don't believe this. I hope this too shall pass (quickly Dear Lord) I cannot allow myself a pity party. Though I must admit it's very tempting at times...
I hope I am making a big deal out of nothing. Will let you know.
Florence
Gwen Love - 13 Dec 2005 19:27 GMT Florence, you are absolutely right to be involved in anything concerning your husband. And certainly no one should object. I just hope all goes well today with you and the children at the meeting. Gwen
>I am assuming he must see the Dr to have the meds adjusted. > [quoted text clipped - 15 lines] > > Florence Florence A - 14 Dec 2005 01:34 GMT Thanks so much for all your responses. I needed the boosts.
They believe as I do, Don just can't handle the chatter & confusion in the dining room. Add also: the AD is worsening.and he's not able to express his needs. He eats very fast. I don't think he is hungry---but truly frustrated looking for words he can't remember. I try not to think of these things--- I pushed a bit about this family conference. What were we to discuss? My son and daughter would have to take off work etc.
It boiled down to the need to move Don to another room. He is the only one in the double room..He has been in this room since entering the place which originally was for respite..I liked the room because it was right across from the common room, (not much chance of getting lost). My guess is they may be expecting respiite guests.& I might object.
Talk about a mountain out of a mole hill...sheesh. and I had such a bad night. I wish this Christmas time was over--not much fun anymore.. whoops, slipping into my "pity party" mood.
I do feel much better today. Again Friends ---thanks for listening
Sincerely, Florence
michelle - 14 Dec 2005 03:07 GMT I know how you feel "pity party mood "that is you have your good days and your bad regards Michelle
Florence A - 14 Dec 2005 15:35 GMT I think to me"pity party" means just feeling sorry for myself. Family & friends have heard it all,,,had enough..... even I have had enough ..sort of like running out of tears.
Time for some levity or action. Wish I had energy to build a chicken coop (envious obviously) or go dancing.....even discus the world problems........Where did it all go?...I missed the brass ring.
In the beginning of this journey I would write these things but never hit the send button. I realize it is what it is---just do your best etc.
I've gotten thru a lot of "crap" with the aid of this group.. found pity parties don't work. (guess they have their place) BUT, they suck.---- hope this doesn't offend
Evelyn Ruut - 14 Dec 2005 16:39 GMT >I think to me"pity party" means just feeling sorry for myself. Family & > friends have heard it all,,,had enough..... even I have had enough [quoted text clipped - 11 lines] > parties don't work. (guess they have their place) BUT, they suck.---- > hope this doesn't offend Hi Florence,
Caregiver depression is VERY real and it lasts even after you aren't the one doing the main part of caregiving. I know. Believe me, I do know.
A lot of it has to do with this time of year too. That has been scientifically proven, you know?....
How to beat it? Do something physical. Get moving and get out of the house a bit. Even if it is just to go shopping and buy the ingredients to make a nice pot of soup to warm your bones in this nasty cold weather.
(we are having zero degree fahrenheit weather in this area of the USA this past few days)
Also, turn on the lights. Limited sunlight can bring on depression. In scandinavian countries they actually have special treatment rooms with very bright lights just to sit in for a few minutes at a time, to treat that kind of depression.
It may not cure the pity-party-blues, but it helps a little bit.
{{{{{{{{{ Florence }}}}}}}}}
big hugs :-)
Now I am going to go and take my own advice too :-)
 Signature
Best Regards, Evelyn
(to reply to me personally, remove 'sox')
Karen - 15 Dec 2005 04:10 GMT My favorite quick cure is to plug in my halogen worklamp -- talk about bright white light! It's probably not the full spectrum like the pricey versions but bright light always makes me feel better. Everyone tries to keep the energy bills down, but dim light doesn't make anyone feel better (okay, with a few recreational exceptions :-).
Karen
> Hi Florence, > [quoted text clipped - 23 lines] > > Now I am going to go and take my own advice too :-) Beth Cole - 15 Dec 2005 04:24 GMT > My favorite quick cure is to plug in my halogen worklamp -- talk about > bright white light! It's probably not the full spectrum like the pricey > versions but bright light always makes me feel better. Everyone tries to > keep the energy bills down, but dim light doesn't make anyone feel better > (okay, with a few recreational exceptions :-). Another cheapy solution is to get a grow-lamp bulb that you would use to give "sunlight" to houseplants during the winter, or to start seeds to be planted as seedlings. They often can fit in to the sockets of cheap clip-on lamps, so the whole setup isn't terribly expensive.
Beth
 Signature Evolution takes no prisoners. -- Mandy, "The Grim Adventures of Billy & Mandy"
Florence A - 15 Dec 2005 14:45 GMT As I sit here now ,the sun is gloriously bright shining on the snow. Hoping the results will be no disparaging remarks to anyone.from me------though it is tempting at times..
I believe Anthony is terribly angry at his situation and he wants us to realise----it's not him, he's different. Most of us are caretakers and cannot have his take on AD from his angle. Anthony , most of the hands on caretakers (at times) also wonder, What's next ? ill it be me? have I lost it?
There is another discussion group which comes up on WEBTV. I believe most who post there have AD--could be wrong--- Anyway...They seem a happy enough group...are quite flippant & kind of playful about their deficits. I pop in there on occasion to see how most of them are getting along.. I just went there to get the address in case anyone is interested. You used o have to join but I tried to post today and that requirement seems to have disappeared. alt.discuss.clubs.private.bandaid8622
that's all I know---
Anthony Shipley - 05 Jan 2006 01:19 GMT >I believe Anthony is terribly angry at his situation and he wants us to >realise----it's not him, he's different. Most of us are caretakers and >cannot have his take on AD from his angle. Anthony , most of the hands >on caretakers (at times) also wonder, What's next ? ill it be me? have I >lost it? Ah, we are too ready to re-interpret other's meanings...
>There is another discussion group which comes up on WEBTV. I believe >most who post there have AD--could be wrong--- [quoted text clipped - 7 lines] > >that's all I know--- anthony shipley
Run away with me; I can make you unhappy.
carolinasongbird@gmail.com - 15 Dec 2005 14:48 GMT RIght now it is 32 degrees outside, raining heavily, with a nice coating of ice on everything (other than the roads, thank heavens). So I have FOUR lamps on in my office, peppy music going and an aromatherapy candle lit. There is more than one way to fight the "Forces of Darkness"!
Songbird
Evelyn Ruut - 15 Dec 2005 19:35 GMT > RIght now it is 32 degrees outside, raining heavily, with a nice > coating of ice on everything (other than the roads, thank heavens). So [quoted text clipped - 3 lines] > > Songbird
:-D! We have near zero temps around here. I'm staying in too!
 Signature Best Regards, Evelyn
(to reply to me personally, remove 'sox')
LJ - 17 Dec 2005 14:29 GMT it is 27 here at the moment and I will take the info to heart and keep more lights on around this house <s>
LJ
> RIght now it is 32 degrees outside, raining heavily, with a nice > coating of ice on everything (other than the roads, thank heavens). So [quoted text clipped - 3 lines] > > Songbird LJ - 17 Dec 2005 14:26 GMT can I join in your pity party just for a few hours? ;-) It sounds like you are doing what you can to make things calmer for him. I hope it helps
LJ
> Thanks so much for all your responses. > I needed the boosts. [quoted text clipped - 23 lines] > Sincerely, > Florence Florence A - 17 Dec 2005 17:52 GMT LJ Sure you can join in the "Pity Party" But don't stay too long. Usually there is no one else there, I guess that's good. I decide to get out of the mood when I know that feeling that miserable does not help me or the situation one bit. OK--now watch out!!! I'm polishing my Halo.. Seriously, It's been one helluva journey. Wish I had learned earlier---when to get assistance. You realize you are doing your best...it's not getting better, Dr's are not Gods...& you are angry, have wept yourself dry. Join the pity part for as short a time as possible 15 min to 2 hrs TOPs (that's about a (nap)s worth)
One of my kids used this "pity party" phrase describing one of the grandchildren unhappy moments.
I thought it was so apt in describing how I was feeling instead of "down in the dumps" "depressed" which no one really wants to hear. "I'm having a Pity Party" sort of makes me smile right off ....A good beginning ---Yes I take an antidepressant at times--...when I deem it necessary...
Do take care of yourself,
LJ - 17 Dec 2005 20:18 GMT A short party usually works for me <wink> LJ
> LJ > Sure you can join in the "Pity Party" But don't stay too long. Usually [quoted text clipped - 17 lines] > > Do take care of yourself, Evelyn Ruut - 13 Dec 2005 13:50 GMT >I got a call fro AL facility today. They set up an emergency > appointment with (psych) DR for tomorrow. He was going to eat [quoted text clipped - 22 lines] > > Florence Hi Florence, too bad he wasn't sitting next to our Ida! She had the opposite problem of giving all her food away all the time! She'd offer this or that to anyone. Anyway, I think they ought to have him sit at a separate table, perhaps like you say, near the window. Sometimes the simplest solution is the best.
 Signature Best Regards, Evelyn
(to reply to me personally, remove 'sox')
Mary_Gordon@tvo.org - 13 Dec 2005 18:02 GMT My mother in law got to the point where she ate alone, sitting at a card table, on the ward - they brought her meal up on a tray. Going down to the bustling dining hall with all the action and noise got to be too much for her. She had been eating sitting at a large table with several other residents - and the dining hall itself must have held 100 people at a sitting.
With her, it wasn't just the agitation, it was distraction so she wouldn't eat. She did better sitting quietly by herself in terms of getting food into her.
If you really want to know, sounds like maybe the aid mishandled things. I've been reading some of Dr. Reisbergs recent work - I think he may be on to something. He describes the progress of AD as "retrogenesis" in that as the illness progresses, the person really does get decontructed in a similar but opposite order to their childhood development. He feels that many problems of AD could be better addressed with the kind of emotional response one would show a child of a similar stage, and that many of the emotional outbursts and even the withdrawal, are because the person's emotional needs are not recognized or addressed.
I don't know what stage your hubbie is at, Florence, but say he is similar in capabilities and emotions to a preschooler. He might get confused and try to eat from a plate that wasn't his. He's hungry, he doesn't understand why he's being yelled at and confronted, he feels threatened - and he responds in kind. As a parent, if the situation was happening at YOUR house, you would be soothing, diverting, distracting, cajoling, finding a way to solve it that wouldn't be overwhelming and upsetting for the people at the table and keep it from escalating. My kids certainly were more than capable of spectacular tantrums when they were smaller over food and eating if they were thwarted and then made upset by confrontation and yelling.
Perhaps the way the food was laid out was confusing - i.e. if the seats could be arranged so other plates and cups are not close to his - just leave a little more space between him and his table mates, or maybe he could be on the end of a long table so there is only one plate in front of him.
I can see why they would get upset with him threating someone with an implement, but I do think they could handle this better and more creatively to avoid a recurrence. Have they even tried to amend the seating arrangement? Simple thing to try out and might solve the problem.
Mary G.
J.Joyce - 16 Dec 2005 17:58 GMT As I was always visiting John at lunchtime, I became aware of what was happening at each table, since I also helped to cut up food and serve. ... When I saw it happening, I tried first myself by joking and smiling to change the behavior and it often worked....OR, I directed the patient to see how nice my dog was sitting in a chair nearby....... When I saw anger or frustration I told the nurses..... Even sitting him at a different table, with other patients might help, unless he WANTS to be by himself.
Are you having help from Hospice? ... John was seen by them twice a week, and what I could not handle, they took care of. Discussed meds with Dr., helped get wheelchair from V A, ordered pureed food etc. etc... and more than that, helped to make his death easier than the nursing home was able to do. I will be forever grateful to them.
Take care of yourself, ~ P. J. ~
Florence A - 17 Dec 2005 00:29 GMT Joyce- It seems the AL place has the situation under control...at least for a while---I hope. Don is becoming more frustrated as his comprehension declines. He seems to search in vain for words ---Language has abandoned him. When given direction it's like talking to the wind. Example: "Sit" must be repeated as one would repeat to a pet.
It's very tough to see this. He eats well & fast. as if to indicate another job done --- He has taken to singing...with the residents.. Words are improvised or faked.. I am going to shop for oldies but goodies tapes..sing alongs. someone told me theirs broke or disappeared
Funny but so sad.
Adelle - 19 Dec 2005 17:45 GMT Florence,
Hi! So sorry all this is happening.
Something struck me in what you said. Please forgive if I can't recall the your husband's diagnosis and the meds he is already on. But his language problems and outbursts reminds me of my Father in Law, whose dementia/deficits began in the frontal lobes of the brain.
This is different in presentation than AD, which tends to begin in the rear of the brain. Some memory stays intact longer. But control of emotions and other 'executive' functioning (process as in the order in which one does something; appropriate choices like clothing for a situation; not eating or drinking from someone else's tray, etc.) goes earlier.
The reason I ask is that AL is set up for people who function fairly compliantly and can follow routine without too much prodding. With a frontal lobe dementia, that ability to follow multiple instructions of routine gets impaired earlier. And because the LO has trouble controlling emotion (and knowing what emotions are appropriate for a situation) they also tend toward outbursts that staff in AL facilities aren't trained to deal with. They often become 'behavior problems.'
If frontal lobe dementia is a possibility, you might want to consult his doc about a medication adjustment which might assist his functioning. You might also give some thought to the need in the near future for a different kind of facility - one with more skilled staff and procedures for potential behavioral issues.
When my MIL moved my FIL to a different facility (after being asked to leave because of physical outbursts), the staff was much better at giving him his meds exactly on schedule, getting him to actually swallow them, and setting up his 'world' so that he didn't encounter situations which triggered outbursts. Though he wound up passing away just a few months after transfer, they were the best few months he'd had in a long time.
Adelle
> Joyce- > It seems the AL place has the situation under control...at least for a [quoted text clipped - 12 lines] > > Funny but so sad. Florence A - 19 Dec 2005 21:18 GMT Adelle. I don't quite understand all of what you said. I thought that since this all started about 1993 the progression would just continue & these outbursts would be,or could be controlled by a change in meds. (which has been done continually) reduction on the Paxil---add. Rispadal then add Depakote adjusting as needed...
I know different parts of the brain are continually being affected. He is still on Aricept & Namenda So much of Don is just no longer there.
Would the frontal lobe be the worse part. At this point would ths matter much...I fear the day of the request to leave the facility. Your E mail took a bit of this pain away.. He was happy & singing 2 months ago...But now I am wondering , what's next.?
Florence
Adelle - 19 Dec 2005 22:43 GMT > Adelle. I don't quite understand all of what you said. I thought that > since this all started about 1993 the progression would just continue & > these outbursts would be,or could be controlled by a change in meds. My FIL's were controlled by meds, but only when they were adminisrtered on a very carefully kept schedule. He had no outbreaks in the second facility or in the psych ward when he was rejected by the first facility. But he had outbursts (physically violent) at that first facility. We assume from those facts that the first facility was not giving him his meds on an even and constant schedule.
> (which has been done continually) reduction on the Paxil---add. > Rispadal then add Depakote adjusting as needed... I think those are the meds my FIL was on, too. But rather than reduced, he needed to maintain a constant level, just like someone with bi-polar needs a constant blood level. Finding the right levels (dosages) was done as an inpatient in a psych facility. You should talk to Don's doctor about maybe the dosages needing to be adjusted again (or be all the time instead of as needed).
Wasn't a pretty time as psych wards do not deal with dementia well. They are geared towards people who can still make choices. Not recommended unless there is no alternative.
> I know different parts of the brain are continually being affected. He > is still on > Aricept & Namenda So much of Don is just no longer there. > > Would the frontal lobe be the worse part. Dunno if it's worse. If this has been going on for twelve years, this could just be AD finally moving forward from the rear of the brain to the front. If that is so, it means what AD has always meant - that sadly Don continues to lose parts of what make him Don and while we can slow it and ameliorate some of the effects, modern medicine can't make the progression stop altogether. He's entering another phase of this terrible disease.
When it's frontal lobe dementia, these things happen early in the disease process. It's a much faster decline to muteness and inability to connect with another person. But often these patients live a long time in their mute isolated state. It's really sad.
What was most difficult for my FIL was the loss of oral motor skills. He was immediately and significantly affected by anesthesia for a broken hip and lost the ability speak beyond moaning sounds and could not swallow well. He aspirated something and within days had pneumonia. That set off a chain of other health crises that ended in his death. But that was him. No two people are affected the exact same way on the same progression.
> At this point would ths matter much...I fear the day of the request to > leave the facility. Your E mail took a bit of this > pain away.. He was happy & singing 2 months ago...But now I am > wondering , what's next.? It could just be that an adjustment in meds is in order. Or it could be progression, which happens in fits and starts very unevenly.
Sorry, my crystal ball is in the shop. Never told anything useful anyway.
Adelle
Florence A - 20 Dec 2005 02:31 GMT No, what you've told me coincides with my belief---It's progressing
I feel badly because I don't like to go visit., they are short visits--- can't stay away, I can't fix anything. He just seems so confused. When this first started , ,he was confused but angry trying hard to make sense of his world. This is a different ,,,no arguments , no realization, it just is.what it is. I am grateful I haven't witnessed an episode.
Evelyn Ruut - 20 Dec 2005 11:21 GMT > No, what you've told me coincides with my belief---It's progressing > [quoted text clipped - 5 lines] > realization, it just is.what it is. > I am grateful I haven't witnessed an episode. Hi Florence,
I know how it is, going to visit. It is so depressing. You don't know what to say or do. It isn't like one can have a nice long conversation either. We went through it too. Short visits in which she used to ask if we were going home now, and asking it every 5 seconds. Seeing all those poor sick people, all the strange behaviors and such. But you go anyway even if there is little in the way of real conversation. You make the same small talk each time and answer the repeated questions. In some small way you try and be helpful.... checking the clothing status, helping them eat, or something. Talking to the nurses and aides a bit.... I know exactly how it is. It is difficult, but somehow you know in your heart it is necessary.
Best Regards, Evelyn
Florence A - 20 Dec 2005 15:48 GMT Though many more people are aware of ALZ today then previous generations it still has not touched enough people to be important to the general population. Sure it touches the lives of caretakers---but most of these caregivers are so worn out when it's over they can't throw themselves into fund raising etc....as was done with polio, and HIV. These are afflictions to the young.. Thank goodness my kids generation are trying their dammdest to stay young. Perhaps they will have the energy to take this on...walking, computer life, dieting,and plastic surgery, wont cure this. The baby boomers will. Many of them are joining AARP , :-) Evelyn, you said you know how the visits go,,I hate going but know how important showing my face there is---He still shows signs of recognising me, I'm grateful==well sorta-----but that's about it..I brought a christmas tree for him,,,Comment from Don---"Oh yeah!"
I went back on Lexapro for the holidays...(smiling) tears just wear me out and truly accomplish nothing... I was hoping to get to TX for a spell out of the miserable cold....Will that happen? Who knows?
Florence
Evelyn Ruut - 20 Dec 2005 16:23 GMT > Though many more people are aware of ALZ today then previous > generations it still has not touched enough people to be important to [quoted text clipped - 20 lines] > > Florence Hi Florence,
Holiday blues are very real, so are caregiver blues. Add to that the winter blues. Put them together and it is a triple whammy.
My daughter wants us to go to TX for a bit too. I want to wait till the bluebonnets start blooming. I want to look forward to it, and it will be a real respite for me. TX in the spring is almost heaven.
Hang in there, Florence. Better times are yet to come. We have to believe that :-)
Best Regards, Ev
Dennis P. Harris - 21 Dec 2005 03:21 GMT > I know how it is, going to visit. It is so depressing. You don't know > what to say or do. It isn't like one can have a nice long conversation > either. We went through it too. Short visits in which she used to ask if > we were going home now, and asking it every 5 seconds. I've always found that many AD folks are just happy to have someone hold their hand or give them a hug, no words necessary.
If they're cognizant or a former gardener, in the summer I bring them a single flower (making certain to pick edible ones), which can be a source of wonder for the seriously impaired.
Karen - 22 Dec 2005 05:41 GMT > > I know how it is, going to visit. It is so depressing. You don't know > > what to say or do. It isn't like one can have a nice long conversation [quoted text clipped - 7 lines] > them a single flower (making certain to pick edible ones), which > can be a source of wonder for the seriously impaired. We always take my MIL a small chocolate shake. It's a good way to check her dental work and she always was a chocoholic. :-) Conversations tend to limited to "this is good!" but it gives the visit something to center around. I don't know how much of the time she knows who is bringing the shake but that doesn't really matter.
A few times we've taken her cat to visit. She doesn't recognize him but she enjoys chasing him around the room to pet him. We stopped this though because the cat was getting car sick.
I think it helps that there are vacation pictures in her room. When she asks about going home we tell her that she is on vacation and already paid for the night on this room -- always works.
Karen
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