Follow
Share

My Dad had Lewy's Body Dementia. A horrible combo of Alzhiemers and Parkinson's. He has had a physical therapist coming to help him get stronger. When the pt is here is aware and can do everything the pt asks him to do. As soon as he leaves and all the rest of the day he is confused and can't do anything for himself. Is this normal? We can't seem to convince the pt that his behavior when he is here is abnormal to his daily routine. We need help it is making us all frustrated and confused.

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
Rola, you are getting some good advice. I'd also try to get your dad's doctor to understand his activity level and it sounds like anxiety. Maybe they can help him with anxiety medication. Somehow, you have to get some relief.

Carol
(0)
Report

Rola,
It does sound similar. It is difficult. My mom did the opposite and gained about 40 pounds. It has made her knees and feet have a lot of pain, so she can do less now. She's such a good person and I know depression can really change a person. My dad went to a facility for a very short time and it was awful. His things dissappeared and when we would show up unannounced, they would not be doing what they were suppose to. Even said they did things in the computer that they had never done, we were there, the time they said it was done. It was so scary for us to leave him in a place where he wasn't being taken care of, we just brought him home. There are probably better places, but as long as I can help, we'll keep him at home.
I do know it is so important for you to get away from it once in awhile. If you can pay someone or get a family member to relieve you just for a few hours it can make all the difference. If you get sick or stressed out, it is not good for any of you. Is your father a Veteran by any chance? Every state is different, but they offer respite care a few hours to 20 hours a week. It would be worth looking into.
There is also a really great book called the 36 hour day about doing what we are doing. And it really does help to talk to other people about it. Sometimes I just need to get it all out. It helps when it's other people that understand what you are going through. That's all I know! Hopefully a professional will be able to offer us help. It's not easy!
(0)
Report

Hi Stormy. That is why I am moving in with my Folks. My Father had Esophageal Cancer, now has no real stomach (although he can eat anything now :) and has had a few treatments and surgeries since. He is now clear of cancer, but it has taken its toll. My Father, for years now, has done ALL the driving, shopping, etc..Now with Mom getting so difficult, He really needs my help. Hopefully he will be able to do the things he enjoys more when he has the energy and is feeling well, rather than having to worry about the shopping or leaving Mom alone.

Wow Rola, I'm sorry to hear, it seems like your hands are more than full. Have you looked into a facility that specializes in Alzheimes care? There are a few really good ones out there that can handle a man such as your Father. You can't help him if you are not able to care for yourself, let alone the stress. Sounds like your Mom needs to talk with a doctor as that is A LOT of weight to drop so quickly. I really can't answer your question about if worse is coming, my Mom is not diagnosed and is not as symptomatic as your Father is. I am sure others on here with more exp. will be able to help you.
Be well, Lori
(0)
Report

Hi Lori,Allison, and everyone.
It looks we all in the shoe. It becomes very tough now.I tried 3 different assisted living facilities, and all of them discharge my dad . I tried recepie care "someone comes to my house and help me out ". My dad abused them .They refused to come to my house because my is very active and keep them very busy.He is following me all the day holding my hand and want to take me outside. I either walk with him or drive him in the car about 7 hours a day . I really feel exhausted he never feel tired. He keep me busy all the day for nothing and the badthing all anti- phys didn't work to keep him calm . My mom left the house because she can't take this any more . i don't blame her. She lost about 40 lbs in 3 months.I am really worried about her and about myself. How should I deal with situation ? Is the coming worse than now?
Thanks
Rola
(0)
Report

Hi Lorilocks,
I moved recently to help care for my parents also. It was so different when I actually got here and saw what was happening. My dad does have dementia. Something called Lewy's Body Dementia, which is a combo of alzheimers and parkinsons. My mom is the one I am concerned with, she does all of his caregiving and she has become very emotional. She even yells at him. It is so awful for me, to hear. I understand why she is frustrated, but my dad can not help his behavior. My mom has no insurance, so she won't go to the doctor for help. Mom has always been there for everyone else in the family, but now they have all dissapeared. They rarely even call anymore. So it has fallen to me to take care of everyone. I'm not sure what I can do for my mom. I'm having a difficult time.
Thanks for listening - Allison
(0)
Report

Thanks Carol :)
I take an anti D, and have tried others, some without good results. My Father also recently started taking one, and he says he feels better too, we have tried to educate her, she is just convinced they are all bad...We will continue to work on it.
My Father is all for the Geriatric Assessment, thinks it would be a great way for us to find out whats going on with Mom. I am concerned though, that he may not be covered as he does not show any signs of confusion, forgetfullness, etc.. He is going to ask their Doctor about getting a referral for them.
It will be easier to monitor Mom once I am actually living there. Then I can see how, when and if she takes her other meds as she should be, and hopefully find out whats up with her.
By the way, my Moms name is Carrol :)
(0)
Report

I'm not surprised she wouldn't go alone. If the doctor can make her understand that many people find one anti-depressant makes them worse, but a different one helps, that would be good.

That's why anyone with depression must be watched carefully. Some people seem to take one and that's that, but I've witnessed resistance to anti-depressants, and I've witnessed people made worse by some.

It's hard to get someone to try another one after a bad experience, but hopefully your dad, you and the doctor can convince her that she needs something.

Hang in. It's tough.
Carol
(0)
Report

Thanks Carol. I agree she probably is depressed, the problem is, she will NOT take anything for it. The Doc gave her prozac once and she felt worse, so now she refuses any meds like that.
I am going to see if I can talk them both going in for a geriatric assessment. There is NO WAY she would go herself, but if my Dad went too, under the pretense that it will help me help them, then maybe we can get her some help.
Thanks again, Lori
(0)
Report

Hi Loirilocks,
Fooling the doctors seems to be a common occurance. My mother was great at that and she was also great at fooling any vistors who didn't see her daily.

Your mom may or may not have dementia, but it sounds like she is depressed. Has the doctor looked into that? Does she need to see a different doctor or a specialist? Obviously, things aren't right.

Glad you can vent, anyway. It does help.

Take care,
Carol
(0)
Report

Wow, I have the opposite problem...Mom is driving Dad crazy! I will be moving in with them at the end of this month to help out as much as I can. (I am permanently disabled due to chronic back pain)
We really aren't sure what Mom has. Like other posts, she fools the healthcare professionals, but we can see the decline and it seems to be coming faster. She is easily confused, I think also somewhat depressed. She is argumentative with my Father and at times myself. She cannot be pleased by anything...there is always SOMMETHING for her to complain about- Too hot, too cold, too loud, too tired...NOTHING is right for her. Just trying to take her out to lunch with us is a project.
I wonder if anyone has any ideas on how to get her diagnosed? She has a Geriatric PCP who has asked her a few questions and decided she does not have alzheimers, that she is fine. He doesn't spend the time with her as we do to see it. Where else can I go from here?? Oh, she, of course, thinks there is absolutely nothing wrong with her.
Thanks for letting me vent!
Lori
(0)
Report

Kelly bean...Do you think that dementia facilities ...assisted living...nursing home..will cause more mental problems for my dad if i used them for a certain period of time
(0)
Report

My mom didn't handle my dad's dementia well, either. I think that they feel the loss of their mate as they were so accutely that they can't make the "switch" to working with them with the dementia. Some can, of course. But some can't. A lot depends on personality and their own mental state.

Carol
(0)
Report

Jschneid,
I'm glad you responded! I also, did not know there was a geriatric social worker. When I lived far away and mom was in the hospital for upteenth time within a 6 month period, her doctor called my brother and said "she needs assisted living". My brother, of course, threw it in my lap. It got so frustrating since I didn't know what to do. I called the local Dept of Social Services Aging Div. Yes, they've gotten her help, but her social worker, who happens to be head of the Dept, all she screams is "assisted living" too. Is this the only answer?? I didn't think so hence why I came home. I feel with her mental condition she really is best cared for in the home. I'm going to call her social worker in the a.m and check to see if there is someone else who can help evaluate the situation. Thanks again!
(0)
Report

Thank you so much. I had not heard of a geriatric social worker. Maybe they will have some suggestions. Any help right now is so appreciated. It's all so overwhelming.
Thank you - Allison
(0)
Report

I think the professionals are aware of it, but since they don't see it themselves, they don't see where the problem begins and how to make it better. My mom was told to let the wounds(she's also a diabetic) "air out". This was said by the doctor at the Wound Care center. I found her picking her wounds raw. I asked her what she thought she was doing and she said "they told me to keep the wounds open". It's now come to the point that I can't leave her alone for a MINUTE? No thanks! I can't live like that. Make her wear mittens like she made me when I had the chicken pox? I sleep when she sleeps now. This is a 1 bedroom, so If she wakes, I'm on the couch and can hear her. My mom LOVES tv. She's addicted. When she starts to drive me crazy, I turn on a movie that I KNOW she would hate. She quickly high tails it into her room to watch something. And promptly falls asleep. Her naptime is my only salvation. I play on the internet, call friends or family. I play with my cat, read. My stress reliever is whatever I find enjoyable at the moment, even if it is in the home and only for a couple hours.
(0)
Report

Thank you. It's just nice to know that it may be normal. If it is, why aren't the professionals aware of it? Everyone seems to think he's doing well. But the day-to-day living is difficult and it seems to change on a daily basis. I just wish my Mom could have more help. We just can't afford it. I'm working 2 jobs and school. I help on my days off and when I get home. But it would be nice to to just get away together once in awhile and let our minds clear. What do you do to relieve stress?
(0)
Report

Stormy, I am so new to taking care of my mother that I have barely begun unravel her needs, etc. She also has dementia. Before I moved in with her, I lived out of state. I didn't know what to do! I could barely take care of myself let alone my mom! So I called social services for the aging. They got her some help! But it was still inevitable, I had to move in. Your issue is something that I am now realizing with my mom. No matter what she is told or learns, she is almost immediately confused as soon as we get home/the help leaves. She just nods and agrees with whatever the doctors tell her as if she knows what was said to her last week or so. They didn't know that NO she doesn't know. They don't see how far she is. They don't see the confusion as I have seen it. I have started asking her doctors and money manager to write down what it is that she needs to take care of. Lower her dosage of something(doesnt matter that I give her her meds, she still inspects it and comments and argues). I have them highlight information for me, I repeat new instructions to her often. I don't get in the middle of her appointments, but I ask questions that she doesn't. I pretend sometimes that I didn't hear something or needed elaborating. If I let her do it alone, she also becomes very disoriented. I let her see that I am apart of these things, so that she can associate me and them together. All this, so that when an issue arises, my mom feels that I'm apart of it all too and she doesn't feel alone, she feels that we can "work it out together". I don't know if this helped or not. It helps me, and hopefully, you can take a little something from it!
(0)
Report

This discussion has been closed for comment. Start a New Discussion.