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 Defiance 
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Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
Post Defiance
I need advice to help me deal with a defiant, stubborn husband. I know my problem must be very common and no doubt far less serious than many of the problems some of you have to face each day with your LO, but being the sole caregiver is all very new to me and I'm having problems dealing with it. The paranoia and resulting stress I'm developing just trying to keep him "safe" are wearing me out. I feel like a new mother caring for her newborn and I'm turning into an overprotective and nagging wife. When I apologize to him about being so overprotective, he says, "Oh, you sure are", and I can sense (and understand) the frustration and resentment he must feel having to rely on my assistance for things he always did for himself.

Although there are several areas in which he's defiant, the one I need to address the most is his safety. Because he's so unsteady and wobbles like a drunken sailor, he MUST use his walker at all times. His doctors, the physical therapist, the children and everyone else warn him that he must use it. He does use it when he's at the Outreach program or at his physical therapy sessions because he has no choice, but once he gets home he refuses to use it. I'm paranoid about falls because he's already fallen three times since Thanksgiving and had to be hospitalized for one of them. We live upstairs and I shudder every time he gets up because he has to pass by the stairway to get to other rooms and even though I place the walker right by his lift recliner, he wobbles right past it when he gets up out of the chair (which is always a struggle because he also refuses to use the lift mechanism). My reaction? I stop whatever I'm doing and start yelling at him to use his walker. He ignores me so I wind up walking right behind him in case I have to grab him. NO GOOD!

I'm well aware how difficult it must be for him to come to terms with his condition even though I'm not sure if he fully understands the changes taking place or if he's just in denial about it. Regardless, his safety comes before anything else and I would appreciate knowing how others have dealt with similar "defiance" problems. Thanks so much.

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Marilyn


Sat Apr 28, 2007 12:04 pm
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Dear Marilyn,
You are at a cross roads that is very hard, we kind of by passed the whole walker issue too for the very same reason, not that we didn't have it just out of refusal on my husbands part, he had countless falls and you would think he would use it, I never did find a solution really I tried the role reversal, nothing..........Yet he would let the PT take him out of the house using the walker..........The day came when he could hardly walk with/without walker and thats when the wheelchair came into play he was stubborn and stayed in the house and one day he asked if he could go with me I told him no! If he wanted to go he had to sit in the wheelchair and he finally agreed that had to be better than sitting in a lift chair all day long , Stubborn they are!
I wish I had the answer for you but there really is none except telling him what would he do if it was you being so stubborn, that might hit home for him but I doubt it!
Good Luck and this too shall pass! :roll:


Sat Apr 28, 2007 12:52 pm

Joined: Thu Jan 18, 2007 11:38 pm
Posts: 65
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I think what is hard at this stage - and I say this more as an observer than a caregiver - my mother was the major caregiver - is that you are trying to reason with them - yes they should use the walker - or no they can't drive etc but the reality is (I think) that the disease has already taken them past the point where that works. In my father's case you could argue with him or get him to do what you wanted, by ultimatum, but the very next instant you would be at the same place. He is now in assisted living because my mom couldn't keep him safe and keep her health and well being. He has had numerous falls. My sisters wanted him to get a walker, but the truth is using a walker, for him, was not a habit established long ago, so there was no way he would ever use it. He might for one moment use it but the next not and it could most likely be used as a chair, phone or any other object other than a walker that you could think of. The same goes for hearing aids, splints for broken arms etc. I get that they get frustrated by people trying to help but that comes from them not having an understanding of what is happening- I think. So what do you do? Whatever you have to do to stay healthy yourself and still take care of them. It may not be taking care of them at home or it may be having someone with you all the time to help. I don't feel that my dad wants, at this point (and I hope this doesn't sound harsh) is what is important. If so he would still be driving, doing (or not doing) the bills etc. We just had to admit to ourselves that this horrible disease takes and doesn't give much and that the father (and husband) we all loved is there some of the time but it is precious little these days.


Kani


Sat Apr 28, 2007 4:12 pm
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Joined: Mon Mar 12, 2007 8:29 am
Posts: 69
Location: uk
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We're having similar difficulties with Mum but not about the walker (she point blank refuses to use that and its had to be put out of sight in the shed). She's at home in a warden controlled bungalow and has carers calling 4 times a day and the family sit with her at night and put her to bed. For our peace of mind, whilst we all work, she has a life line which is connected to a call centre. She wears a pendant around her neck which she can press if she gets into trouble, she also has a falls belt which she must wear around her waist and should she fall the alarm is activated and someone can be alerted almost immediatley.

We have the problem now that she's refusing to wear the belt as its 'restrictive and digs in' causing her too much pain. No amount of cajoling or reasoning will convince her otherwise and we spoke at great lenght about the reasons why she doesn't want to wear it, coming up with it being her way of taking back some control of what she does. We also think that she thinks she can't go out if she's wearing it, trying to think of the last time she left the house alone and we're unable to remember when it was. But she suggested to us that if she didn't have to wear it she could go visiting with her friend and her niece. When we asked how she would get there on her own she said she could catch the bus! Bless her heart....We still don't know what to do but the thought of her falling and being unable to get up or raise the alarm herself gives us enormous anxiety.


Mon Apr 30, 2007 4:38 am
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Joined: Sat Oct 28, 2006 5:34 pm
Posts: 40
Location: Ontario Canada
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It is interesting that your husband will use his walker at his Group session "because he has to". He complies with the Rules "because he has to" and then he defies you because he can.
I don't really think there is anything you can do to change that behaviour unless your doctor can intervene and tell hubby in no uncertain terms what lies in store for someone who breaks a hip or worse and ends up in a Nursing home full-time.
This is a really tough stage for caregivers and LBD patients - it causes a degree of resentment on both sides. Hang in there!

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"Im pedalling as fast as I can!"


Mon Apr 30, 2007 10:40 am
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Joined: Fri Jul 21, 2006 1:05 pm
Posts: 51
Location: Houston, TX
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Take it first hand. Do anything you can to avoid your LO ending up in the hospital with a broken hip. That is where my mom is right now. The pain med's and being out of her normal enviroment are causing a great deal of confusion, delusions and hallucinations. Some times she knows who I am, some times she does not. Keeps plucking things out the air, petting small animals that are not in her lap.

They started Seraquil sp? last night and the agitation continued just a little more sedated. Her Dr. was just in and thinks the weekend Dr. may have started her on too low a dose, given too late. After the agitation started. He is going to give a higher dose tonight much earlier. Before the agitation starts, about 4:30. Then another dose at 8 pm. If she is not calmed down by 9 pm, he wants a phone call from the nurses. He says at this point we will just have to see day to day. Wish us luck, and do all you can to keep your LO from falling.

Jennifer


Mon Apr 30, 2007 12:17 pm
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Dear Jennifer,
So sorry things are so hard for your Mother right now, the confusion is so great when they are out of their enviroment. I do hope the up^ in the seroquel does the trick in helping with her agitation, It worked well for us!
Even with doing everything you can to keep them safe it is still so hard when they won't cooperate with those trying to help them.
I hope things start looking up for you :roll:


Mon Apr 30, 2007 2:58 pm

Joined: Mon Mar 12, 2007 8:29 am
Posts: 69
Location: uk
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My thoughts are with you and your Mom, Jennifer.

Kind regards
Dawn


Mon Apr 30, 2007 4:11 pm
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Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
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Jennifer....

I'm so sorry about your Mom, and I hope she mends quickly so that life can ease up a bit for you. This is not an easy disease to deal with, as I'm finding out. All of us share (or have shared) similar experiences, just at different stages along the continuum. Do let us know how your Mom is doing now and if the higher dose of medication worked for her.

To everyone else......thanks so much for your input. I am finding his stubborness difficult to deal especially when throughout our married life he's always been such an agreeable person. His doctors have warned him about using the walker, as has everyone else. On the last visit to his neurologist, the doctor stood right in front of him and shook his finger in his face and sternly warned him that not only could he do irreparable harm to himself if he falls, but that he was also being very unfair to me by allowing me to worry so much. Think that helped??

As Irene said, "this too shall pass". I just hope it passes before my husband seriously hurts himself.

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Marilyn


Wed May 02, 2007 11:20 am
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Joined: Fri Jul 21, 2006 1:05 pm
Posts: 51
Location: Houston, TX
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Thank you all for your concern. My mom is in a rehab hospital now, but she can't concentrate enough to do the rehab on her hip. The Seroquel helps her be less agitated in the evenings, but she still tried to get up and out of bed at 1 am this morning and took another fall. They will be x-raying the hip today, but she has to stay in bed until they get it x-rayed. That's making her angry today. She actually knew my name when I went to see her on my way to work today. Probably because she is mad at me. Blames me for her current condition. Oh well, some days are diamonds...............
Jennifer


Fri May 04, 2007 12:44 pm
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Joined: Thu Apr 26, 2007 10:11 pm
Posts: 7
Location: Kingsland, Arkansas
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I understand where you are coming from with the defiant... My dad and I care for my mother who has LBD, and I am new to this forum but have gotten very well acquainted with LBD. My mother will refuse to take a bath or let you help her bath because she thinks she doesnt need one, or maybe she believes she has already taken one. (And "STUBBORN" , something else this disease does to a person. ) She won't take that bath. She gets her mind made up to do something or not to do something and there is no changing her mind. And although she can't remember telling you the same thing 5 times within 30 minutes she won't forget that she IS NOT gonna take that bath.
If my brother cooks supper she will not eat it . Refuses to eat it because she doesn't think he can cook. If my brother cooks and my dad tells her that he cooked it then it is the best thing in the world. She never tasted anything so good.
My mother doesn't believe that she is sick. She has even told my dad that he needs to see a psychiatrist because he can't see the things that she see's.
I don't think there is any way to make a LB patient do anything new, anything that they don't want to even if it is for their own safety. Their minds just don't take in anything new. And the way their mind mixes up things that you learn as a child. Just this week my dad was getting mother dressed and she was having a fit because "he put her socks on the wrong feet".... ( I had to laugh at that one) He couldn't make her understand there is no left or right with socks. That is didn't matter what foot you put your socks on. Well no convincing her of that. He had to take them off and swop them around.
This disease is terrible I hate what its done to my family. I hate the fact that the caregivers for LBD patients are more knowledgeable about this disease than most doctors. I am learning there is no right or wrong way to handle your loved one. Each day is different, each person is different and we just have to live and learn day to day and pray that tomorrow will be a little bit better.

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Marsha
Mother age 54 has LBD .


Sat May 05, 2007 1:01 am
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Joined: Fri Jul 21, 2006 1:05 pm
Posts: 51
Location: Houston, TX
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Hello. Just an update on my Mom. The re-hab hospital was a nightmare. Let Mom fall twice, and they would not help her stay clean. Twice I showed up and she still had the same clothes on for the third day straight. Dentures were not being taken care of, sores on her nose from her eyeglasses, they left them on all night. Starting to get bed sores on her heels and bottom after only one week. It was awful, and she was begging to get out of there.

My sister came down from Pittsburgh and we called a family conference. We all agreed she could not go back to IL. She has just gotten so much worse in the year she has been there. So we started looking for AL. Long story short, there are some terrible places out there. Look nice on the outside, but no one working there really seems to care, and most don't really understand dementia.

But God really does answer prayers. We had an appt. at one place on Monday morning at 10 am. They had one opening, and that was only because some poor soul had died on Saturday. It's very homey, not like a hospital or institution at all. They specialize in dementias, and have even had one LBD resident. When we were telling Mom about it I told her that every body there had memory problems also, so she wouldn't have to worry about being embarrassed or ashamed when she couldn't make sense. She just looked at us and said "You mean I don't have to pretend anymore?" Just about broke my heart. I think the hardest part of all this for her has been that she knows what's happening to her some of the time. And no one can fix it.

They have 46 residents, about half women and half men. She seems content to be there. There are some residents much worse off than her, but she doesn't seem to mind. The activities there are much more on her level of cognitive functioning. I believe she will enjoy more days there than any place else. They have 2 house dogs, 2 house cats, 2 bird enclosures and a large aquarium. And they let Mom bring her dog also, which she has not been able to take care of for a year. Kids are always welcome, they even have a little playground area in the yard, and lots of paths to walk. Now I'm rattling on.

I do have one question. Although I know my part is far from over, I still need to make sure everything stays OK and be an advocate, I can't seem to get over the feeling that I need to check on her at least twice a day. How do I get past feeling totally responsible, and letting the AL take over the daily help? It's been a long five years when the only person she really had to take care of her was me. I guess I want permission to have a life again. Is that crazy or what?
Well, thanks for listening and caring.

Jennifer


Tue May 15, 2007 12:31 pm
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jennifer brock wrote:

I do have one question. Although I know my part is far from over, I still need to make sure everything stays OK and be an advocate, I can't seem to get over the feeling that I need to check on her at least twice a day. How do I get past feeling totally responsible, and letting the AL take over the daily help? It's been a long five years when the only person she really had to take care of her was me. I guess I want permission to have a life again. Is that crazy or what?
Well, thanks for listening and caring.

Jennifer


Hi Jennifer,
So sorry that you and your family are going through these type of decisions, its always so hard on families, I am glad you found a place that all seems OK with, but I must warn you assisted living is just to assist with things, you need to find out about who will be with them in the evenings, do they do showers or do they just assist, what about medications are resident responsible to go get them or are they brought to them, I am only telling you this because I am sure you remember last yr my Mom passed away she lived in a ALF and I thought it was wonderful too and she had an emergency call button she wore around her neck, she woke one night with severe chest pains and called and no on responded that was at 3:30 am she somehow got herself to the hallway and another resident heard her and brought her into his room he used the call button and still nothing he finally called 911 himself, I recived the call at almost 5:30 am thats 2 hours later, my Mother was sent a priority 1 and she never did come home again, turns out the aide that was on that night claims she was in a residents room giving a shower, she was fired, big deal my Mom still died, now my Mom was NOT a dementia patient and this why I am bringing this up your Mother is and I think needs that special care. Good Luck in whatever you all do, You are doing everything you can to protect your Mom and the feeling of being there 2x a day will go away in time if this place is going to work out, you have every right to have your own life and should! I wish you well!


Tue May 15, 2007 3:40 pm

Joined: Thu Jan 18, 2007 11:38 pm
Posts: 65
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Hi Jennifer,
I can really relate. My dad had to go to an ALF in February of this year. He has LBD. We were lucky in that he is in one that specializes in dementias - they are familiar with LBD and once notified that was what my dad had went straight to work making sure all of their personnel were updated on it. My dad can age in place there and from what I can see they do a wonderful job. I've stopped in many times without warning and always have immediate access to my dad and his cottage. I feel confident what I've seen is the reality. Of course, they can't be with him every step and he has fallen. But this would be the case whether he was at home or anywhere unless restrained. You most definitely are entitled to a life and should not feel guilty. You have to know when to let go and when they will be better off in a different environment. My mom has felt somewhat guilty not only for putting my dad there but also because she has such a sense of relief and because she is enjoying her new life. For the first time in two years she can go to bed and not have to keep one eye open, she can walk around the block and she can eat without having to try and get my dad to eat. My dad too is relieved, he asks on occasionally to come home, but I think it is a relief not to have to try to meet our expectations or to try and act like everything is okay. They are excellent at redirecting him so that he doesn't have all of the frustration with his family who it seems were always telling him no and don't. We tried to redirect but with a member of your own family it is much more difficult. At first I asked how often we should visit, trying to figure out what would work best. They said people often came 2-3 times a week at first and then usually it would drop off. The thing is if you came every day several times he still might ask you when and why you haven't been there. If you didn't come for a week he would think you were there every day. So I guess I feel you have to go as often as you would like and what works best for you. Don't let anyone or you yourself guilt you into feeling guilty. You've taken care of your lo and that is all you can do. Go on and live - you deserve a life.

Kani


Wed May 16, 2007 10:16 am
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Joined: Wed May 16, 2007 9:01 am
Posts: 4
Post new member very sad!!!!!!!!!!!!!!!
My name is Steve. I just losed my father to this disease called LBD. My father was diagnosed with dementia 2002.My father was put on seriquil and paxil and he was ok until 5 o'clock when his hallucinations kicked in! My father speech and memory was the first to go and then it went to hallucinations, lose of weight and became very lazy which that was not my father style.Finally on Jan 1 2007. He finally went off and I was force to take hm to the hospital. He was admitted for dementia and mri and other brain test and everything came back negative! Doctor said he is in perfect shape!! except for his dementia. He was admitted for a over night stay just for precautions.In the morning we called and the doctor said the floor is under lock down! The next time I saw him was 8days later and he was in a diaper and he was so druged up he didn't even know me!!!!They put him on haldol, geodone,zyprexia. Finally the doctor said you have to place him! Me and my mom were shocked.We put him in a nursing home and they said they couldn't handle him. They sent him to a drug rehab to have his meds adjusted. In a week of using him like a animal trying all these meds. He didn't know nobody except my mom. He couldn't talk or walk! had to be spoon fed by my mother everyday. The conclusion is finally after all these doctors treated him one doctor said he has LBD. He was diagnosed only 5 weeks ago of this disease. I just found out that all the meds he has been on has had a adverse affect on my dad. Jan 1 he was able to drive a car, cut the grass, work part time, walk everyday for exercise, and in 8 days he turned into a vegtable! I'm sick over this because my father just passed on May 10 2007 and I'm heart broken because me and my dad we close and i'll never see him again!!! Steve c :cry: :cry: :cry:


Wed May 16, 2007 4:02 pm
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