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    • CommentAuthorLindylou
    • CommentTimeOct 25th 2017
     
    I’m starting this page to move the being “Activity Director” discussion away from the How do I deal with poop page. I think it deserves a page of its own. I will probably add additional thoughts on this matter ( I have many) at a later time.

    I’ve worked in nursing homes for much of my life in the roll of Activity Director. Those of you with spouse’s who are in care facilities will understand my perspective.

    In a nursing home it is the nurse’s aide’s job to get your loved one up and out of bed, toileted, and washed and dressed. It is the housekeeper’s job to clean the bathroom afterwards. It is the laundry department’s job to wash the bedding and the clothes. It is the nurse’s job to prepare the medications and make sure loved one takes them without choking. It is the food service department that cooks provides breakfast. The aide comes into the picture again to make sure that breakfast is consumed. And it is the Activity Director’s job to provide additional brain, physical and social stimulation. We haven’t even got to lunch yet.

    What is important to get out of this picture is that all these people get to leave and go home after eight hours. In addition, at least in theory, they get two breaks and a half hour lunch when they are not on duty. Those of us who are caregivers at home fill all these rolls, with no breaks most of the time. And we have interrupted sleep.

    So if a spouse is napping or sitting in front of TV, we can either choose to be food services, housekeeper, laundry worker, or to take our coffee break. Should be no guilt here if we choose not to be Activity Director at this moment. This former Activity Director did not feel any. I chose to do the best I could and still survive.
    • CommentAuthorRodstar43
    • CommentTimeOct 25th 2017 edited
     
    I just want to be the visitor. wait, I guess that is not on the choice menu. Even a 15 minute break would be nice.. However, guess I will have to settle on the wife's sleeping.
    • CommentAuthorWolf
    • CommentTimeOct 25th 2017
     
    "I was just reading Elizabeth's comment "who are these people who are saying keep their brain active". I took a 30-hour course from our local Alzheimer Society & they stressed that it's the caregiver's responsibility to cognitively stimulate Alzheimer patients - that if they sit there & sleep it's because they are bored."

    I gather it was this comment by poor Nicky who is obviously surrounded by brainless barbarians that instigated this topic.

    You can stimulate Alzheimer's patients with an electric cattle prod - it isn't going to do anything to the progression of the disease they actually have.

    It's the words 'cognitively stimulate' that evidence the sick denial of the reality of the existence of brain deterioration, and it's the transference of the responsibility of that denial to the caregiver that is the worst of this.

    You can stimulate an Alzheimer's patient with the entire staff of Stanford or a box full of tasers - it isn't going to make any difference.

    There is zero medical evidence that pushing their brain dysfunction in their face all the time does anything except torture everybody involved. How medieval can you get?
    • CommentAuthorbhv
    • CommentTimeOct 25th 2017 edited
     
    Dear Lindylou, thanks for separating this. Great subject line.
    I like your rundown of the tasks and separation of duties. The other day he told me I don't do anything for him. I.said every waking moment... he laughed and said oh yeah right you are miss perfect.
    I have been trying to make myself think of it as a job and take breaks. When I see something I don't like around the property I throw it away or fix it or take a sledge hammer to it. That last one is very rewarding. When I see something I want I buy it. No more ridiculous anguish.over making purchases. That has haunted me all my life. I have bee saving to make sure I had enough to take care of myself as an old woman. Time to start taking care of that old woman.
    Nikki - the classes I took didn't go.so far.as saying it is the caregiver's responsibility. They kept stressing just keeping them safe but had suggestions for keeping them occupied and engaged.

    When I went to visit some adult day care.places several months ago they didn't have TVs. The guy said "Oh, we are far too busy to waste.time on tv!" But none of their activities sounded like my husband would participate. And it didn't sound like they would handle bouts of diarrhea very well.
    • CommentAuthorbhv
    • CommentTimeOct 25th 2017
     
    Rodstar43, you are at assisted living. Are you sure you can't get her to participate in activities and then slip out yourself for awhile? She still has the ability to crochet. Isn't there a group of ladies there that do that together? What about Bingo? At my FIL's assisted living they had an awful lot of Bible study things. We thought Roy might have trouble finding things to do because they were not religious. Amazingly he started going to those Bible groups. Just to be around the people.
    Even if she rejected the idea before, you might try again. I had a mindset that when sometghing didn't work I would cross it off "the list" and never do it again. I have recently found that he accepts things he rejected a.year ago. Each day is actually a brand new world.
  1.  
    Wolf's insistence that stimulation of an Alzheimer's patient with an electric cattle prod or even the entire staff of Stanford isn't going to make any difference in progression of the disease seems to dismiss out of hand the reality that the admittedly doomed patient is still "in there" to some degree, maybe still capable of some enjoyment, and certainly deserving of as much respact and consideration as the caregiver is reasonably able to provide. While I can understand how some worn out caregivers might view such attempted stimulation as torture, other caregivers might not.
    • CommentAuthormyrtle*
    • CommentTimeOct 25th 2017 edited
     
    Lindylou, This is one of the best comments I’ve read on this site because it give us a different but totally accurate way of looking at our situations.

    Wolf, You’re absolutely right to distinguish between the goal of “cognitive stimulation” and that of making the person happier and less anxious. The former goal is unrealistic and it’s dishonest and wrong for medical or social services people to suggest that it does. When my dad had Alz in the 1980s, it broke my heart to see my mother (a speech pathologist and teacher by training) try for years to reverse the disease by trying to “cognitively stimulate” him. In those days, less was known about the disease and there was more BS surrounding it, so I’m not sure whether she was in denial or just following “expert” advice. BTW, the image of the entire faculty of Stanford University earnestly trying to "cognitively stimulate" a dementia patient made me laugh out loud, as did the thought of a humorless law enforcement officer applying a taser. Both evoke the concept of “authorities” who don’t have a clue.

    Gourdchipper, Wolf did not say or imply that Alz patients are not still "in there" or that they are not capable of enjoyment or deserving of respect. He was talking about the notion that activities can stop or reverse the progression of the disease. I though the comment was funny, but I appreciate “gallows humor,” whereas others may not.
  2.  
    Myrtle*, the visuals made me laugh out loud too. Thank you for clarifying and adding to the original post by Wolf. You never disappoint - and I mean that sincerely.
    I am always happy to notice that you have posted something because you have such an analytical and thorough take on things.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 25th 2017
     
    My husband has no interest in activities unless I am there doing them but he doesn't like what I like - computer and I don't like what he likes - walking. He is a social person so that is why day care is good for him. He refuses to participate in any activities but does chat with people - from what I am told.

    I also think it makes a difference whether the person like activities when they 'normal' whether they will now.

    As I said, I have no desire to be his activity director!
    • CommentAuthorbhv
    • CommentTimeOct 25th 2017 edited
     
    Thanks myrtle. I've been thinking about gourdchippers.comments all day. I think I have shown the ultimate of respect by staying with him even after he punched me twice even though our marriage "contract" clearly stated one punch and you are out in my game. And he certainly is capable of enjoyment. He is happy as a clam watching NCIS while I.scrub the poop he smeared all over the carpet this afternoon. I put on the world series for him. That is all the "activity director" is capable of today.
    I was trying to figure out if he could enjoy outings and if it was worth the trouble to do that sort of thing because sitting around all.day every day is getting to me. Apparently day trips are out of the question. Meaning travel is out of the question. Tomorrow I will see if he can manage coming grocery shopping with me. He says he likes to do that. And I can take him for a ride in his truck. It is a pain in the neck taking him there because he no longer understands about putting everything on the checkout counter. Checking out is way more complicated than I ever realized til now. Keeping track of the checker, baggers, paying and supervising him is exhausting. Not to mention coming home and putting everything away with him being as counter productive as possible. But yeah, gourdchipper, I try to maintain respect for him and try not to correct his errors and remain calm as I do everything 2 or 3 times. Because he is still capable of enjoying it. Then I go outside and punch a wall or slam my head against a wall or do some more digging with my injured wrist or just get drunk. Because no one has any respect for me in this house. I get threatened several times a day. He hasnt landed another punch though! But yeah why don't I see if I can find something he will enjoy.

    But gourdchipper, I DO respect what you said because there are lots of people here who have lovey dovey relationships and spouses who are not violent and agreeable. In fact I am somewhat jealous of these people. And, in fact I have learned a great deal from you and them over the years. So please don't quit on me. It actually makes me happy to know that the kind of love Lindylou had for her partner, and vice versa, exists in the world.
    • CommentAuthorRodstar43
    • CommentTimeOct 25th 2017 edited
     
    bhv, thanks for your thoughts about ALF. Yes they have Bingo and no crafts. Some residents gather for cookies and games like 42 or sequence. My wife would never go by herself. She clings to me. My daughter got her to go to Bingo one time and her being docile was new. My daughter even got her to help make cookies and fudge. My kids have figured out how to "handle" her but, they have their own busy lives and drama. And 2 of the 3 live 2,000 miles away. She has no motivation or capibility to do those things. I do not have much care as the chronic pain zaps so much of my erergy and initiative. I have no desire to be her activity director. What good what it do. She does not remember anything 4 minutes ago. She is happy just to be with me, so I do what I really feel I can do. Isn't that selfish. So far I am not overwelmed by this schedule. It is what it is. Also, I think the cancer is advancing by the week. So, I answer the same questions about the past and who is dead or alive.

    Thought, why in the AD mind does she continually ask about who is dead or alive. Sometimes, the same question is asked ever 10 minutes ie. are my my mother and father alive? They died. mid 80s.
    • CommentAuthorbhv
    • CommentTimeOct 25th 2017
     
    Sorry about no craft groups.Rodstar. Was.hoping for a way.for you to just slip.away...
    I haven't heard of that question about who is dead or alive. My MIL would frequently.wake up afraid the creek was rising! As a very small.child she lived .in Kentucky. I think she left there when she was.5. A lot of people try t find people who are dead. My hospice nurse friend tells.them the person went out for awhile but she will tell the person you are looking for them. That usually calms them.down til.they ask again.
    • CommentAuthorRodstar43
    • CommentTimeOct 25th 2017 edited
     
    bhv, it is curious, almost every night before she falls asleep she asks thes same questions. It has been going on for a year. A phase I guess. There are no, repeat no hints of the, "aree they alive" subject at all. She will even ask about her older brother even though she talked to him an hour before. I just answer the question no matter how many times asked. What else can I do? It is better than the kids never call routine.
    • CommentAuthorbobbie
    • CommentTimeOct 26th 2017
     
    My dh will not go to any activities, with or without me. He wants to stay in his bed and "watch" tv and then wonder why he is getting so weak/
    He has worked his whole life, hunted, built, and etc. Other activities don't interest him. I figure at 81, he can do what he wants to. I
    know it isn't good for him, but neither is him getting mad at me for trying to "activity director" his life. Love the thought tho.
    • CommentAuthorRodstar43
    • CommentTimeOct 26th 2017
     
    Bobbie, when do y'all meet? The ALZ group that is?
    your story of activities is about the same for me. She might go but I am in pain, feel like sh..., so we watch TV. Very seldom do I have a good day, so she puts up with me. Who knowss what would haooen if she were normal.
    • CommentAuthorNicky
    • CommentTimeOct 26th 2017
     
    I agree, being Activity Director is draining & challenging. It was difficult finding an activity he would like & even trickier to find one he could actually understand - I would try to tailor the game to fit his cognitive abilities. When he could play a game it was good for both of us, but when he had trouble with an activity, it was usually a board game - whether it was lack of memory or inability to understand, he always got angry & frustrated, because he knew he could do that activity in the past. When I saw he had difficulty, I'd tell him it was OK & I was also finding the game hard & I was tired of the game anyway, but he never believed me - he was still very aware of what he was losing. He would often slap his hand down on the table & walk away - needless to say it ruined the remainder of the day. So, I always had mixed feelings - frustrated & very sad to see how much he'd lost..... He was a high school teacher, teaching Math, Science & Computers & now couldn't even sign his name..... I spent a lot of time in the bathroom crying - he would knock on the door & ask me if I was OK.

    One activity that lasted the longest was colouring Mandalas & other adult colouring books. I like to colour, so I very much enjoyed the time we spent colouring together. He coloured very well & was very good at choosing & matching his colours & doing shading. Eventually he became too restless to sit long enough to colour & didn't seem to know what to do with the colouring pencil. I would start to colour in hopes he'd join me, but he couldn't. Actually I haven't been able to sit down & colour alone since he's been in residence - it's been 4½ months.
    • CommentAuthorRona
    • CommentTimeOct 26th 2017
     
    Lisa has been in care now for just about 16 months. Since she is young and active I wanted a place that was bright cheerful and had activities and outings. Boy was I wrong. It quickly became apparent that what she needed was a calm environment with less stimulation. She does not do well with people around her she becomes frightened. Now about the only activity, if you can call it that, is walking she continually walks. Lately they will have her with a small group sitting around with a heavy blanket on listening to very soft music this seems to calm her. Just having someone with her either walking with her sitting with her just being with her is what is needed.
  3.  
    Here are a couple of articles about positive behavior response of Alzheimer's patients to "music therapy". No claim is made by the authors that the therapy alters the nerve cell damage caused by AD or course of the disease -- only that it seems to help the patient's mood, etc. by allowing them to somehow better access and make use of the remaining undamaged brain cells. I really do ascribe the relatively "easy" job I had in caring for my DW in part to our continuing to expose her to music that she had grown up with and loved. I would encourage others to try this as well. It takes far less effort to provide soothing music than to try most other "activity director" things that I can think of.

    http://journals.lww.com/neurologynow/pages/articleviewer.aspx?year=2008&issue=04010&article=00014&type=FullText

    http://journals.lww.com/neurologynow/pages/articleviewer.aspx?year=2006&issue=02050&article=00017&type=FullText
    • CommentAuthorbhv
    • CommentTimeOct 26th 2017
     
    Thanks gourdchipper. Those articles.are fascinating. I have a niece who has a master's.degree in music theory. We talk about music and the brain all the time. Her father was brain damaged when she was only two. He could sing so many things and music was crucial to keeping him calm. I have a fairly large collection of oldies cds for Jim. Actually he made them when he could still use the computer. They are very helpful. When we have a power outage I have an mp3 player I can hook to battery operated speakers. That is a serious life saver!
    • CommentAuthorLindylou
    • CommentTimeOct 27th 2017
     
    bhv, In Massachusetts and I think in your state as well, there are two kinds of adult day care: Social Adult Day Care Programs and Adult Day Health Centers. The second type should have no difficulty accepting people with incontinence issues. They have nurses and CNAs, both equipped to provide needed personal hygiene. The PACE program that both my mother and then later my partner joined had an ADHC (Adult Day Health Center) as part of the overall program. It quite literally saved my sanity. At the point they joined the ADHC they needed 24 hour supervision and assistance that I did not have the strength or will to provide indefinitely by myself. I'm hoping you have success in your search and can find something close by.

    I believe you are right, Wolf, that no amount of stimulation or activities reverse or even slow down the progression of brain deterioration. And I believe that is wrong wrong wrong to foist guilt onto caregivers who are already doing as much or more than they can.

    Gourdchipper, when caring for my partner I always believed she was "in there", and I tried to treat her so that she'd know that I knew. Through some miracle of grace she was at times able to have these small lucid moments that I will never forget.

    Activities can provide a moment of enjoyment for our loved ones because the moment is all they have. After the moment has passed it is as if the event never happened. Except, I really believe that joy, frustration, anger, and peacefulness all can leave a residue with them that lingers on. Hence the lasting emotional impact of music and touch and accomplishment and and and…… I just don’t feel that guilt should play a part in mandating that we be providing all kinds of time consuming stimulation in addition to what we are doing. Playing music was a no brainer for us because in addition to being a nurse my partner was a musician and she always enjoyed it. But as long as she could focus on the TV it too was an activity. For a long time she laughed along with the “Golden Girls”.
    • CommentAuthorRodstar43
    • CommentTimeOct 27th 2017
     
    Lindylou, u up that eaerly, even in the east?
    • CommentAuthorRodstar43
    • CommentTimeOct 27th 2017
     
    Lindylou, your comments to Wolf is right on target. Also, I'm glad I do not have to deal with
    incontinence - yet. I am not reay to cast her off. A lot of her is still there. Her trust in me is total, I will not break that trust as long as I an not broken. Cancer is raising it's ugly head too.

    How are you doing as time goes by?
    • CommentAuthorbobbie
    • CommentTimeOct 27th 2017
     
    Our caregivers group meets on the 3rd Tuesdays, from 1 till 2:00-3:00. Lots of sharing, and trying to help each other. It helps me.

    My DH says he is in a prison and will never get out, and also that he is bored and lonesome. I know he is, but he will do nothing to help himself. I have
    run thru all my program manager programs. Whe he is so negative and down, I come home and feel like such a failure. Surely there is something
    I could do to help him
  4.  
    bobbie, your husband could have some depression. It is not unusual for AD patients to be put on lose dose anti-depressants, so if he isn't on one now you might want to bring this up with his doctor.
    • CommentAuthorNicky
    • CommentTimeOct 28th 2017
     
    Bobbie, you're not a failure at all, you're still in his life doing everything you can to take care of him. Unfortunately your fighting a losing battle. It sounds like he's still in that stage of being aware of losing his capacities but unable to change that, so it's making him angry & frustrated (& who wouldn't be). He feels alone because he can't make sense of what's going on in his own head. My husband once told me while he was crying, that I had no idea what it was like to be in his head - that it was awful in there. That's a very difficult stage to be in, but his mood will get better when he gets a bit worse. When he's less aware of his losses, he will be calmer. I know it got better when my husband declined.

    Is your husband still able to stay home alone? You might want to consider getting someone to spend time with him when you're out. Once a week & sometimes twice, I had someone from the Alzheimer Society to come & keep him company. At first he didn't like it too much, but he hated being home alone even more, so he started to kind of "enjoy" those weekly visits. It was also someone other than me spending time with him - probably gave him a break from me as much as I got a break from his dementia symptoms. The worker from the Alzheimer Society, would suggest activities & anything he wanted to do she would do with him. She took him for walks around our neighborhood, took him on outings, baked muffins with him, sometimes played some games if he wanted to & often sat with him watching TV & if wanted to sleep that was fine with her. I noticed he tended to be more "polite" with her than he was with me. He always disliked the fact that I went out without him, but it was mostly just one afternoon a week, so I allowed myself to "not feel guilty". In order for him not to get too upset, I told him I had an appointment & I must leave. He often asked me with whom & I told him I was seeing the doctor about my menopause - seeing the dr. was an app't he knew I had to keep & menopause he knew was not serious, so he didn't worry about my health. I also told him that about 5 minutes before she arrived & sometimes I waited until she was in the driveway, so he didn't have much time to get upset, because as soon as she walked in, he stopped being upset. So, perhaps if you haven't tried that, it might help you? I remember being there & it's tough - I'm sorry I can't be of more help - a suggestion is all I can offer.
    • CommentAuthorRodstar43
    • CommentTimeOct 28th 2017
     
    Nicky is right, fighting battle.
    The military, if losing a battle has used RETREAT as a tactic in order to win. Maybe Retreat now and then will help us in this AD war.
    • CommentAuthorRodstar43
    • CommentTimeOct 31st 2017 edited
     
    bobbie, you are not a failure, no way possible!!!!!!!
    Remember, there is actual physical damage in his brain. No matter how you try, you cannot change what is happening to him. At best, maybe a slow down. You did not cause this trend or even his bad day so, no way can you fail. period, period................