Guest guest Posted April 9, 2006 Report Posted April 9, 2006 Yes, thank you, it was a wonderful image. I am so grateful that there are really those types of relationships out there! What sweetheart parents. I am glad you are able to enjoy them even with the whole situation, I do think their original personality really does play a huge part, for both the one with LBD and the caretaker. In LBDcaregivers , Skrabek wrote: > > : > > You painted a very vivid picture for me of your parents. Lovely! You are one lucky kid! And your parents are lucky to have each other. > > > > Cowie wrote: Hi , > Just want to throw my 2 cents into the mix - may take me a while! > My aged parents live with me now - Mum 86 with LBD, Dad a very frail 92. > I'm the 61 yo, retired, kid :-)). > My life, too, is on 'hold' right now, but, that is just fine with me. > I have to be the luckiest 'kid' on the planet. I feel so sorry for those of you who did not have parents like mine. > > Dad was, and is, the centre of Mum's universe. She/we did everything to make Dad's home comfortable.[i remember being dragged out of bed early on winter mornings to shovel the driveway so that when Dad was ready to go to work he would not have to shovel himself out. I hated those mornings!!!] > > Long before any diagnosis, as Mum became less able, Dad would assume her 'duties' - cooking, shopping, laundry... > Today, as every day, Dad grieves for the loss of his soulmate. > Today, as every day, I grieve the loss of my mum, my best friend. > They still hold hands, Dad still pats her butt, they cuddle sometimes in bed. > It hurts my heart to see this. > Although his physical condition is so very much worse than Mum's, Dad's only concern is Mum and how I am coping as primary caregiver to both of them. > [Dad insists on emptying the dishwasher every day. He has to take 2 Tylenol and has lie down for half an hour after he has done that!] > I could NOT survive without Dad's help. > > , my heart goes out to you. > I have no idea how you manage. > > > > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote
Guest guest Posted April 9, 2006 Report Posted April 9, 2006 Hi , In answer to your question about how a nurse/assistant treated your mom and my experience with a caregiver. Just recently, I had a problem wtih a caregiver. I have an agency that I call when I need to go out or have an appointment. They have sent me some good people that Jim really likes, but recently, I called and they sent a man that seemed nice enough when I was giving him all the details on Jim's needs for the day. For the next few days after, Jim was very quiet and not talking. I was really concerned about him and why he wasn't talking. He said that man made fun of his mummbling and he couldn't get words out to have a conversation and the man complained he couldn't understand Jim. It made Jim self-conscious that he can not carry on a conversation. I got Jim to talk and now he feels better, because I told him that man will never come here again and not to worry. I have informed the agency too. Also, in Jim's delusional way, he thought I was having an affair with this man and that is why I had him at the house. Sometimes you've got to laugh. I'm still not sure that he believes I have nothing to do with this guy. In his mind, because I had a conversation with this guy, he must be my lover. Jim didn't want this guy near him for both of these reasons and it is funny, because the guy said when I returned home that Jim got his walker and was going at a fast clip around the house and he couldn't believe how fast Jim could go. This amazed me until Jim later told me he was running to get away from the guy, so he couldn't catch him. Oh My, what goes on in their minds is too amusing. Jan --- wrote: > Thank you, Imogene, for your comments. I agree > wholeheartedly with > everything you said. And I am trying very hard to > not feel bitter > towards my dad, simply, his past history and his > personality make it > difficult for my brother and I to deal with him > sometimes. However, > I did have a nice visit with him in the hospital > yesterday and > managed to hold my tongue when he didn't ask about > my mom, I told > him anyway. I did get him to talk about what he > would do when he > gets home and that he needs support groups, > counseling and coping > strategies for his grief and his loneliness, since > my brother and I > cannot replace what living with someone else for 59 > years was like. > We just can't be there enough. We have started to > discuss assisted > living with him, since he is always better with > people around. He's > even okay with his roommate on the psych ward > (that's saying a lot > on the psych ward!). Goes to show how desparate he > is for adult > company!! > > Anyway, I have tried to set boundaries and he does > try to make us > both feel guilty, this is something I think we > should discuss in the > family part of the counseling that goes on with him. > We are doing > the most that we can. > > As usual, my mother was a sweetheart when I visited > her yesterday > also, and she sure enjoys the hot fudge sundaes I > bring her!! She > is lonely but she deals with it differently. I did > have some > concerns about a story she told me about how one of > the nurses or > assistants had treated her recently, has anyone had > any experience > with that - you know if you go with the story to the > nursing > supervisor, they are going to tell you that she made > it all up, or > it's part of her paranoia with the LBD, or whatever. > I told my > mother if it ever happened again, to ask them to > call me > immediately, however, who knows if she'll remember > to do that, or if > they would call??? > > Anyway, thanks for your words, Imogene, from what I > have heard of > your posts on the board, you ARE a saint!! > > > > > > > > > > , I am not of your generation, I am older. > But, I have had > your > > experience with the old man being self centered > and not wanting > to take on one ounce > > of responsibility. Not even toward his own son > during and after > open heart > > surgery. No visits. > > > > When my MIL became incontinent, and harder to take > care of, we > were expected > > to do it. I was doing it for awhile, out of love > for my husband, > but he > > didn't want me to go through dealing with her > messing all over the > house, and > > having the old man come over and hover over me > complaining about > how bad his > > wife was. All the things she did wrong, and > feeling sorry for his > poor pitiful > > lonely state. He wanted no responsibility and all > the pity. He had > no > > understand of what she nor I was dealing with. I > was more than > willing to take care > > of her. > > > > Isn't it true that many people are totally > selfish? > > > > Don't turn bitter toward him. Just know in his old > age, he > doesn't know how > > to deal with life any longer, and may have some > issues he is not > revealing? > > Men are often like that. > > > > Please don't be angry or guilty. Visit your mother > when you can. > If your > > father is there too, then you can see him there, > and tell him > that. You only > > have so much of you, so if he wants to visit, then > see you when > you visit your > > mother, and make a family gathering out of it. > Stand firm with it. > You should > > have some life. > > > > I would have cared for both my husband's parents, > even though > they fought > > tooth and nail for many years, but I wouldn't care > for them at the > same time. > > Putting them together was setting myself up as a > referee. And, > that is where I > > drew the line. NO way! > > > > Draw your lines, and stay with it. That is all I > can say. And > don't let > > anyone make you feel guilty. I don't believe any > of us really want > to do that to > > you. I sure don't. > > Imogene > > > > > > In a message dated 4/6/2006 4:16:13 PM Central > Daylight Time, > > mckendrsusan@... writes: > > > > I want to comment in return to both June and > Carole. I don't > want > > to get into a main caregiver vs a secondary > caregiver > comparison. > > But - you need to be sure you know the whole > story before > responding > > as if I am the 'well-meaning' family member, and > being a little > > harsh in what you are saying. > > > > I agree with everything you said, June, in regard > to what a > > caregiver goes through. And - when my father was > the 'main' > > caregiver, I went much lighter on him, because of > what he was > going > > through. However, what you didn't take into > account, but I had > > mentioned a number of posts back, is that he was a > very difficult > > man and totally self-centered man long before > this ever > happened. > > My mother waited on him hand and foot, as did his > kids when we > were > > at home, way up until about 6 years ago or so. > He was rarely > > appreciative, very critical, extremely anal and > obsessive, and > > abusive to top it off, until at age 15 I told him > if he laid > another > > hand on me, I'd be going straight to the police. > > > > > Now - in his present state, which is what I was > referring to in > the > > post you were responding to - my mother has been > in a nh since > last > > August, so he has NOT been the caregiver in any > way, === message truncated === Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay Area, California __________________________________________________ Quote
Guest guest Posted April 10, 2006 Report Posted April 10, 2006 Thanks for your input, Jan - it's hard to know what really goes on sometimes too, and whether they perceive it right. Although what my mother described was well within the confines of someone who was really trying to keep her from hurting herself, but not going about it in quite the right way, being a little rougher and gruffer than needed and saying things inappropriately, but then my mother has also described some things that we have observed, in a somewhat off way, so I'm never sure if it really happened or if it's an exaggeration that she forms in her head. Anyway, I'm hoping it doesn't repeat, she said it had been fine yesterday when I talked to her and the same person was there that day, so we'll see. I did remind her to have them call me right away again if it happened again. I just hope she remembers. > > > > > > > > > , I am not of your generation, I am older. > > But, I have had > > your > > > experience with the old man being self centered > > and not wanting > > to take on one ounce > > > of responsibility. Not even toward his own son > > during and after > > open heart > > > surgery. No visits. > > > > > > When my MIL became incontinent, and harder to take > > care of, we > > were expected > > > to do it. I was doing it for awhile, out of love > > for my husband, > > but he > > > didn't want me to go through dealing with her > > messing all over the > > house, and > > > having the old man come over and hover over me > > complaining about > > how bad his > > > wife was. All the things she did wrong, and > > feeling sorry for his > > poor pitiful > > > lonely state. He wanted no responsibility and all > > the pity. He had > > no > > > understand of what she nor I was dealing with. I > > was more than > > willing to take care > > > of her. > > > > > > Isn't it true that many people are totally > > selfish? > > > > > > Don't turn bitter toward him. Just know in his old > > age, he > > doesn't know how > > > to deal with life any longer, and may have some > > issues he is not > > revealing? > > > Men are often like that. > > > > > > Please don't be angry or guilty. Visit your mother > > when you can. > > If your > > > father is there too, then you can see him there, > > and tell him > > that. You only > > > have so much of you, so if he wants to visit, then > > see you when > > you visit your > > > mother, and make a family gathering out of it. > > Stand firm with it. > > You should > > > have some life. > > > > > > I would have cared for both my husband's parents, > > even though > > they fought > > > tooth and nail for many years, but I wouldn't care > > for them at the > > same time. > > > Putting them together was setting myself up as a > > referee. And, > > that is where I > > > drew the line. NO way! > > > > > > Draw your lines, and stay with it. That is all I > > can say. And > > don't let > > > anyone make you feel guilty. I don't believe any > > of us really want > > to do that to > > > you. I sure don't. > > > Imogene > > > > > > > > > In a message dated 4/6/2006 4:16:13 PM Central > > Daylight Time, > > > mckendrsusan@ writes: > > > > > > I want to comment in return to both June and > > Carole. I don't > > want > > > to get into a main caregiver vs a secondary > > caregiver > > comparison. > > > But - you need to be sure you know the whole > > story before > > responding > > > as if I am the 'well-meaning' family member, and > > being a little > > > harsh in what you are saying. > > > > > > I agree with everything you said, June, in regard > > to what a > > > caregiver goes through. And - when my father was > > the 'main' > > > caregiver, I went much lighter on him, because of > > what he was > > going > > > through. However, what you didn't take into > > account, but I had > > > mentioned a number of posts back, is that he was a > > very difficult > > > man and totally self-centered man long before > > this ever > > happened. > > > My mother waited on him hand and foot, as did his > > kids when we > > were > > > at home, way up until about 6 years ago or so. > > He was rarely > > > appreciative, very critical, extremely anal and > > obsessive, and > > > abusive to top it off, until at age 15 I told him > > if he laid > > another > > > hand on me, I'd be going straight to the police. > > > > > > > > Now - in his present state, which is what I was > > referring to in > > the > > > post you were responding to - my mother has been > > in a nh since > > last > > > August, so he has NOT been the caregiver in any > > way, > === message truncated === > > > Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay Area, California > > __________________________________________________ > Quote
Guest guest Posted April 10, 2006 Report Posted April 10, 2006 My mom is a retired RN and I have worked as an aide and with doctors for years. Most caregivers are conscientious and caring, but there are those who are careless, thoughtless and even abusive. My mother has gone through honeymoon periods with caregivers, but always after a time she becomes disenchanted with them and informs me of their mistreatment of her. She accused one of twisting her fingers until they hurt, with another it was being verbally abusive, and most recently she has told me that her formerly favorite aide was sarcastic and offensive and she is sure is ignoring her light and refusing to come when she needs her. I always double check with the charge nurse in a conversational way to find out what they perceive is going on with Mom. There are aides/orderlies/nurses who don't do their jobs properly (having worked as an aide years ago, I worked with people who were careless and even abusive toward those unable to defend themselves). I failed to listen to my father who was in the dementia phase of Parkinson's, only to find that he was suffering malnutrition and had unexplained bruising when I moved him to a new adult family home. I make it a point to come and go often and at varying times of the day so I meet many of the caregivers and they know they can't count on a time when they won't be surprised by me. Most of the people caring for Mom are great. A couple have attitude problems (the " diaper " thing, which is a word I HATE for an adult), and some have paid no attention to Mom's needs and therefore fail to help her transfer with proper care of her fractured arm/shoulder. The Director of Nurses, the charge nurses and I are on first name terms with great communication, so any concerns I transmit get immediate attention. Good for everyone who listens to their LO's reports and follows up on them. Demented or not, they deserve to be treated well (certainly we're paying enough to try to ensure that!) and we're the advocates to make sure that's what they get. By the way, this is my second post to this list (still haven't seen the first one show up), and reading the archives and current posts is being wonderfully strengthening. Thank you all. jacqui *** wrote: > Thanks for your input, Jan - it's hard to know what really goes on > sometimes too, and whether they perceive it right. Although what my > mother described was well within the confines of someone who was > really trying to keep her from hurting herself, but not going about > it in quite the right way, being a little rougher and gruffer than > needed and saying things inappropriately, but then my mother has > also described some things that we have observed, in a somewhat off > way, so I'm never sure if it really happened or if it's an > exaggeration that she forms in her head. Quote
Guest guest Posted April 11, 2006 Report Posted April 11, 2006 Jacqui, Sorry about the postings being sp late. I am doing some of the approving and Yahoo is having problems. Ann, the owner is ill and so I am approving. And Ann must be on all the time. I had a full day Sat. with babysitting grandchildren and didn't get to the list as early as I might. Just to let you know who to get to if you have any more problems, it's me! The site following my name is a good one to go visit for lots of information. The latest newsletter is there too. I want to tell those who are new, the new DVD (done by MDS) is available also. If you go to the site and call or email you would like one, or if you know someone in the group who has one they can burn you one. I am having some burned and will be happy when I get them, to send some out. Welcome! Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Re: Re: Now it's my Dad!/ Quote
Guest guest Posted April 11, 2006 Report Posted April 11, 2006 Donna R. What do the DVD cost? I would like one, but not until I know the cost of it. Thanks Imogene In a message dated 4/11/2006 2:45:46 AM Central Daylight Time, twomido@... writes: I want to tell those who are new, the new DVD (done by MDS) is available also. If you go to the site and call or email you would like one, or if you know someone in the group who has one they can burn you one. I am having some burned and will be happy when I get them, to send some out. Welcome! Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Quote
Guest guest Posted April 11, 2006 Report Posted April 11, 2006 Jacqui, Welcome to the List. You have helped us, by sharing your story, and we hope we can help you along the way with our events. I am fairly new to the list, but feel very comfortable with it. And love everyone's supportive and caring attitude. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept and Risperdal. Age 72 in May. In a message dated 4/10/2006 9:15:21 PM Central Daylight Time, jacquiwa@... writes: By the way, this is my second post to this list (still haven't seen the first one show up), and reading the archives and current posts is being wonderfully strengthening. Thank you all. jacqui Quote
Guest guest Posted April 11, 2006 Report Posted April 11, 2006 Hi Jacqui In our home I came up with the term " undergarmets " for the diapers. My MIL now refers to them that way and if somebody comes in to update her file and asks if she is wearing protection, she stares blankly at them then says no. , borough, ON cg to MIL age 69 taking exelon, seroquel, citalopram (celexa),reg tylenol, fosamax, senekot. > > > Thanks for your input, Jan - it's hard to know what really goes on > > sometimes too, and whether they perceive it right. Although what my > > mother described was well within the confines of someone who was > > really trying to keep her from hurting herself, but not going about > > it in quite the right way, being a little rougher and gruffer than > > needed and saying things inappropriately, but then my mother has > > also described some things that we have observed, in a somewhat off > > way, so I'm never sure if it really happened or if it's an > > exaggeration that she forms in her head. > > > > > Quote
Guest guest Posted April 11, 2006 Report Posted April 11, 2006 Jacqui, I agree - there are certainly those out there who do not have the best interest of our LOs at heart. Your email said it well. Have you brought up the things your mother has told you specifically with the head nurse when it occurs and how is the response when you do? You said you are in great communication with them, but I wasn't sure if you had brought up those occasions exactly. I have a very specific story to tell and I am uncertain of the response I may get. My father has always worried too, that once you 'told' on someone, that the retaliation would be even worse than the previous treatment. I'm not sure he's wrong, unfortunately, although he tends to believe the worst of people rather than the better. > > > Thanks for your input, Jan - it's hard to know what really goes on > > sometimes too, and whether they perceive it right. Although what my > > mother described was well within the confines of someone who was > > really trying to keep her from hurting herself, but not going about > > it in quite the right way, being a little rougher and gruffer than > > needed and saying things inappropriately, but then my mother has > > also described some things that we have observed, in a somewhat off > > way, so I'm never sure if it really happened or if it's an > > exaggeration that she forms in her head. > > > > > Quote
Guest guest Posted April 11, 2006 Report Posted April 11, 2006 My poor mother would always worry if I was going to speak up when she complained to me about something. I think she had a lot of fear about retaliation. Especially in that 'hell hole' they called a hospital - she would insist that I don't speak up for her... How sad that on top of LBD, mom had to fear for retaliation from the nurses... Some people are not meant to be caregivers... It's frustrating!! > > > > > Thanks for your input, Jan - it's hard to know what really goes > on > > > sometimes too, and whether they perceive it right. Although > what my > > > mother described was well within the confines of someone who was > > > really trying to keep her from hurting herself, but not going > about > > > it in quite the right way, being a little rougher and gruffer > than > > > needed and saying things inappropriately, but then my mother has > > > also described some things that we have observed, in a somewhat > off > > > way, so I'm never sure if it really happened or if it's an > > > exaggeration that she forms in her head. > > > > > > > > > > Quote
Guest guest Posted April 11, 2006 Report Posted April 11, 2006 Yes, the retaliation is my worry too. Who knows what they do when we are not there. As a nurse, I know that I would burn out in that type of job and would not be at my best, although I can't imagine ever being mean. However, it is a job I should not take, since, like I said, I wouldn't be at my best. There are those who also should make that decision and go into another area of nursing. There are those out there who love working with older people and those with dementia and are the right people in the jobs. I just don't think there are enough of them to go around. > > > > > > > Thanks for your input, Jan - it's hard to know what really goes > > on > > > > sometimes too, and whether they perceive it right. Although > > what my > > > > mother described was well within the confines of someone who was > > > > really trying to keep her from hurting herself, but not going > > about > > > > it in quite the right way, being a little rougher and gruffer > > than > > > > needed and saying things inappropriately, but then my mother has > > > > also described some things that we have observed, in a somewhat > > off > > > > way, so I'm never sure if it really happened or if it's an > > > > exaggeration that she forms in her head. > > > > > > > > > > > > > > > Quote
Guest guest Posted April 11, 2006 Report Posted April 11, 2006 sandra_dil wrote: > In our home I came up with the term " undergarmets " for the diapers. > My MIL now refers to them that way and if somebody comes in to update > her file and asks if she is wearing protection, she stares blankly at > them then says no. Good for you!! That is exactly what I call them. Mom calls them " pads, " as she had years of slight bladder leakage and wore sanitary pads to protect her underwear. It does puzzle those new to caring for Mom, indeed. I've decided that I need to put together a " Mom to English " book for people working with her (going down the hall is, for her, going " upstairs, " for example). *grin* jacqui Quote
Guest guest Posted April 11, 2006 Report Posted April 11, 2006 Oddly, I didn't get this reply e-mail but saw it when replied to it. I hope I'm getting all the posts! > > Have you brought up the things your mother has told you specifically with the head nurse when it occurs and how is the response when you do? < I do bring up these incidents as they are reported to me. I have discussed them also with the Director of Nurses (whose office is next to the nurses station for my mother's wing). The response has been excellent - respectful and responsive to my concerns. I did move Mom from the home where she complained of her fingers being twisted - not because she really was being hurt, but there was only one caregiver there and two other residents who were light care, but Mom's needs were becoming too much for this particular residence to be able to address. One of the things I do first is acquaint myself with the caregivers and talk with them about Mom and her needs, and then later about what Mom reports to me. I do so in a conversational rather than confrontational way until I have an idea of how Mom's perceptions match up with theirs (a skill I learned with my children when they were young). There have been a couple of the caregivers who have not familiarized themselves with Mom and her needs but were helping out from another part of the facility. I have brought this to the attention of the charge nurse and requested that those caring for Mom be given information about her fractured arm and her LBD. There is one aide I dislike and believe is careless and unwilling to give the attention and respect to Mom that she should be getting - after my discussion with the charge nurse, this caregiver was no longer one of the team caring for Mom. The rest of them really like Mom, and are frustrated sometimes with her anger at them. I spend time with the staff when I visit and remind them of the LBD, sharing what I'm learning about it and also helping them get to know Mom as I know her. My experience with my dad in his decline through Parkinson's into dementia was that having him seen as a person rather than a bed or a room number led to better care. Mom, like your dad, is positive that her complaints have led to her being ignored and refusal to care for her. If she turns on her light and someone doesn't show up within 60 seconds, she believes they have abandoned her. (I find her perception of time is very skewed.) She has become very vocal in expressing her anger and irritability (SO unlike her up to now - she was always the one who " stuffed " those things) and will tell caregivers to go away, she'll do things by herself. They've been great about going, but coming back to check on her and she tells me she's " given in " and let them help her after all. One of the saddest things, to me, about this disease is how hostile and frightening the world is for mom, and how sure she is that there is no one but me who wants her or will care for her properly. I am looking forward to the Seroquel giving her some relief from that. *crossing my fingers* jacqui Quote
Guest guest Posted April 12, 2006 Report Posted April 12, 2006 Thanks for your reply, Jacqui. Your communication with the staff sounds excellent. You have given me a lot of help in how to address this. I've even thought of offering to give a presentation about LBD, so that more of the staff is familiar with it. I'm still surprised at how many working in a nh don't know about it or all the idiosyncracies. Even the nurses don't know sometimes about the med reactions that can occur. So - I'll start with the head nurse/supervisor who I've spoken to before and we'll see what he says. > > > Have you brought up the things your mother has told you specifically > with the head nurse when it occurs and how is the response when you do? < > > I do bring up these incidents as they are reported to me. I have > discussed them also with the Director of Nurses (whose office is next to > the nurses station for my mother's wing). The response has been > excellent - respectful and responsive to my concerns. I did move Mom > from the home where she complained of her fingers being twisted - not > because she really was being hurt, but there was only one caregiver > there and two other residents who were light care, but Mom's needs were > becoming too much for this particular residence to be able to address. > > One of the things I do first is acquaint myself with the caregivers and > talk with them about Mom and her needs, and then later about what Mom > reports to me. I do so in a conversational rather than confrontational > way until I have an idea of how Mom's perceptions match up with theirs > (a skill I learned with my children when they were young). There have > been a couple of the caregivers who have not familiarized themselves > with Mom and her needs but were helping out from another part of the > facility. I have brought this to the attention of the charge nurse and > requested that those caring for Mom be given information about her > fractured arm and her LBD. There is one aide I dislike and believe is > careless and unwilling to give the attention and respect to Mom that she > should be getting - after my discussion with the charge nurse, this > caregiver was no longer one of the team caring for Mom. The rest of > them really like Mom, and are frustrated sometimes with her anger at > them. I spend time with the staff when I visit and remind them of the > LBD, sharing what I'm learning about it and also helping them get to > know Mom as I know her. My experience with my dad in his decline > through Parkinson's into dementia was that having him seen as a person > rather than a bed or a room number led to better care. > > Mom, like your dad, is positive that her complaints have led to her > being ignored and refusal to care for her. If she turns on her light > and someone doesn't show up within 60 seconds, she believes they have > abandoned her. (I find her perception of time is very skewed.) She has > become very vocal in expressing her anger and irritability (SO unlike > her up to now - she was always the one who " stuffed " those things) and > will tell caregivers to go away, she'll do things by herself. They've > been great about going, but coming back to check on her and she tells me > she's " given in " and let them help her after all. > > One of the saddest things, to me, about this disease is how hostile and > frightening the world is for mom, and how sure she is that there is no > one but me who wants her or will care for her properly. I am looking > forward to the Seroquel giving her some relief from that. *crossing my > fingers* > > jacqui > Quote
Guest guest Posted April 12, 2006 Report Posted April 12, 2006 Hi Jan What a horrid thing to happen to Jim. I am so glad you are not using that caregiver anymore. On top of everything else Jim does not need to be humiliated too. I even refrain from saying diaper. I use underpants instead. Now it doesn't really matter, but for a while it did. My heart just breaks for him. I hope the agency will get a clue and straighten out their employees. Dena --- Janet Colello wrote: > Hi , > In answer to your question about how a > nurse/assistant > treated your mom and my experience with a caregiver. > Just recently, I had a problem wtih a caregiver. I > have an agency that I call when I need to go out or > have an appointment. They have sent me some good > people that Jim really likes, but recently, I called > and they sent a man that seemed nice enough when I > was > giving him all the details on Jim's needs for the > day. > For the next few days after, Jim was very quiet and > not talking. I was really concerned about him and > why > he wasn't talking. He said that man made fun of his > mummbling and he couldn't get words out to have a > conversation and the man complained he couldn't > understand Jim. It made Jim self-conscious that he > can > not carry on a conversation. I got Jim to talk and > now > he feels better, because I told him that man will > never come here again and not to worry. I have > informed the agency too. Also, in Jim's delusional > way, he thought I was having an affair with this man > and that is why I had him at the house. Sometimes > you've got to laugh. I'm still not sure that he > believes I have nothing to do with this guy. In his > mind, because I had a conversation with this guy, he > must be my lover. Jim didn't want this guy near him > for both of these reasons and it is funny, because > the > guy said when I returned home that Jim got his > walker > and was going at a fast clip around the house and he > couldn't believe how fast Jim could go. This amazed > me > until Jim later told me he was running to get away > from the guy, so he couldn't catch him. Oh My, what > goes on in their minds is too amusing. Jan > > > > > --- wrote: > > > Thank you, Imogene, for your comments. I agree > > wholeheartedly with > > everything you said. And I am trying very hard to > > not feel bitter > > towards my dad, simply, his past history and his > > personality make it > > difficult for my brother and I to deal with him > > sometimes. However, > > I did have a nice visit with him in the hospital > > yesterday and > > managed to hold my tongue when he didn't ask about > > my mom, I told > > him anyway. I did get him to talk about what he > > would do when he > > gets home and that he needs support groups, > > counseling and coping > > strategies for his grief and his loneliness, since > > my brother and I > > cannot replace what living with someone else for > 59 > > years was like. > > We just can't be there enough. We have started to > > discuss assisted > > living with him, since he is always better with > > people around. He's > > even okay with his roommate on the psych ward > > (that's saying a lot > > on the psych ward!). Goes to show how desparate > he > > is for adult > > company!! > > > > Anyway, I have tried to set boundaries and he does > > try to make us > > both feel guilty, this is something I think we > > should discuss in the > > family part of the counseling that goes on with > him. > > We are doing > > the most that we can. > > > > As usual, my mother was a sweetheart when I > visited > > her yesterday > > also, and she sure enjoys the hot fudge sundaes I > > bring her!! She > > is lonely but she deals with it differently. I > did > > have some > > concerns about a story she told me about how one > of > > the nurses or > > assistants had treated her recently, has anyone > had > > any experience > > with that - you know if you go with the story to > the > > nursing > > supervisor, they are going to tell you that she > made > > it all up, or > > it's part of her paranoia with the LBD, or > whatever. > > I told my > > mother if it ever happened again, to ask them to > > call me > > immediately, however, who knows if she'll remember > > to do that, or if > > they would call??? > > > > Anyway, thanks for your words, Imogene, from what > I > > have heard of > > your posts on the board, you ARE a saint!! > > > > > > > > > > > > > > > > > , I am not of your generation, I am older. > > But, I have had > > your > > > experience with the old man being self centered > > and not wanting > > to take on one ounce > > > of responsibility. Not even toward his own son > > during and after > > open heart > > > surgery. No visits. > > > > > > When my MIL became incontinent, and harder to > take > > care of, we > > were expected > > > to do it. I was doing it for awhile, out of love > > for my husband, > > but he > > > didn't want me to go through dealing with her > > messing all over the > > house, and > > > having the old man come over and hover over me > > complaining about > > how bad his > > > wife was. All the things she did wrong, and > > feeling sorry for his > > poor pitiful > > > lonely state. He wanted no responsibility and > all > > the pity. He had > > no > > > understand of what she nor I was dealing with. I > > was more than > > willing to take care > > > of her. > > > > > > Isn't it true that many people are totally > > selfish? > > > > > > Don't turn bitter toward him. Just know in his > old > > age, he > > doesn't know how > > > to deal with life any longer, and may have some > > issues he is not > > revealing? > > > Men are often like that. > > > > > > Please don't be angry or guilty. Visit your > mother > > when you can. > > If your > > > father is there too, then you can see him there, > > and tell him > > that. You only > > > have so much of you, so if he wants to visit, > then > > see you when > > you visit your > > > mother, and make a family gathering out of it. > > Stand firm with it. > > You should > > > have some life. > > > > > > I would have cared for both my husband's > parents, > > even though > > they fought > > > tooth and nail for many years, but I wouldn't > care > > for them at the > > same time. > > > Putting them together was setting myself up as a > === message truncated === __________________________________________________ Quote
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