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By Lynnie2 On 2016.03.29 14:58
I am finally getting some help so I can have a few breaks during the week.
Everyone has been telling me to get help, so last week a caregiver from the Alzheimer's Society came to stay with my husband for 4 hours.
They really got along well and I am so relieved. She came before lunch so got his lunch and they did dishes together. I also left some albums of our travels especially when he rode horseback in the mountains. They also looked at pictures on the wall of the family. She kept him busy all the time, so he didn't sleep like he usually does when I am home.
I went swimming and had lunch by myself and got some apples at a local farm plus visited some friends so I had a good time.
We also went to a Day Away Program at the Alzheimer's Society to meet the staff and learn about the program which runs for 5 1/2 hours per day.
They have a day available for him to go each week.
At first he said he didn't need it, but I explained that I really need to have time to myself and he really needs to have some stimulation and do something different, rather than staying home and watching TV or sleeping.
Our family talked to him on the weekend and he said he would go, however today I said I would call the staff and let them know he was coming, he started to cry later about it. (I guess I shouldn't have said anything)
I know it will take a while to get used to it, but I hope he won't cry too much on the day I take him.
He gets anxious about what is happening the next day and if I tell him too much of what is going on, he gets confused and thinks it is happening that day.
Should I wait until the day of to tell him where we are going?
He probably won't sleep that well thinking about it if I tell him the night before.

By Mary556 On 2016.04.01 22:52
Lynnie, that sounds like a lovely time for both you and your husband.
I was happy to read that you had a nice day. God bless you.

By LOHENGR1N On 2016.04.02 00:05
Lynnie, I'd suggest not telling him the day or night before, myself I get anxiety when something is planned and the day draws closer. In fact I tell My P.C.A. what or where I have to be and ask Her to "handle it" which She does wonderfully. When the time comes We leave She's got all the plans laid and I don't freak-out about it as much. I'll tell you it was hell before I qualified for a P.C.A. I couldn't sleep for several nights before even a trip to the Neurological Referral Center in Boston or anywhere. Back in the latter 1990"s I was supposed to go and take part in a Parkinson's Walker Dog project in Pennsylvania, it was experimental in Conjunction with a Parkinson's program at a Hospital there. I tried several times to get there but anxiety took over and I never made it. The trainers for the dogs were getting a bit peeved at me. Then several months later the head trainer called to chat with me and She told me that We were some of the hardest Patients to get there. Most of Us never made it to them. She said She had one guy who flew to Philly landed and went and boarded the next plane back out west! Leaving them there at the airport ready to pick him up to go to the training facility. So if you can plan it out and let him know in the morning where he's going for a couple hours to try it out is my advice. Good Luck and I hope it works out for you both.

By Lynnie2 On 2016.04.03 18:40
Thanks for your response. If I can help it I'll wait until the morning of, but
I just realized we have an appointment with his family doctor the day before he starts the Day Away Program and he'll probably bring up the subject as he is the one who made the referral.
I was thinking of giving a note when we arrive and warn him that I didn't want to talk about it.
I just don't want him crying about it again or get upset.
They said the first time at the program will be the hardest and not to give up. I just hope he doesn't cause a fuss........but I am being negative.

The last couple of days for a little while (yesterday it was 6 hours though) he doesn't know who I am and gets upset when I don't take him home. We are already home but he doesn't believe me and calls me names.
I know it isn't him but we've changed some meds lately, and I hope that is the reason, or it's the dementia.. Some night he doesn't sleep well so therefore I loose sleep. Last night was the best in a few weeks.
I wasn't going to go to church this morning because of the difficulty of knowing who I am and I was tired but he wanted to go. I thought maybe he'd pull out of the mode he was in so we got ready and went. When he got to church he remarked that the church looked normal! Hurray!
He later knew me, and was okay the rest of the day.
I never know what the next day will bring though. I pray every night for a good sleep and a good day tomorrow.
Oh by the way the minister offered to take us to my husband's next appointment in another city, so I am thankful for that as I need help.

By carman96 On 2016.04.06 00:57
Lynnie, glad you are getting some help. It is very important. I hope your husband can adjust to the changes.
I can relate because sometimes my husband thinks we are going home when we are home and he gets upset with me.
The Dementia is the worst thing. So sad.
I try not to tell him too far ahead of time what we are doing because he will think we are going right away. So better to wait until just before we are going somewhere or the caregiver is coming.
Good luck

By Mary556 On 2016.04.18 15:58
Lynnie, I think of you and hope all is well for your husband and yourself.
Sometimes my PwP had episodes of confusion when she did not recognize me and thought she was someplace other than home. Advice I found in a few books, this is what worked best for us: enter your loved one's reality, try to go along with whatever he believes is true at that moment. Say something to comfort him in that pretend situation. If you try to reason with someone who is confused or in an alternate state, if you try to convince him who you are and where he really is, he is likely to get agitated because you do not believe him.
Often after supper my Mom would think she was in a facility and she would get anxious because she did not have money to pay for her meal. I learned to play-act the role of a friendly staff person and tell her she did not owe anything because that nice gentleman who was sitting next to her had treated her. Or tell her that she had an expense account that was already paid in advance so she did not need to carry cash. Often it helped to move my mother to a different room of the house where she might recognize something familiar... her chair or her pillow, her little clock or calendar on the dresser. Always keep smiling and speak slowly in your reassuring voice. Your husband may not know you as his wife, but he will know you are a kind person who is taking care of him and that will help.

Hoping everything will go well for your respite days away. My family did not try it, but I've read that it helps to call the place "senior center" rather than "day care". If your DH is confused he may have anxiety that you are leaving him and not coming back. Maybe it would help if you told him you have a class in another part of the building and you will meet up with him soon. If he is stressing when you are not there, maybe the coordinators would let you stay and do some activities alongside him for part of his visit so he will feel more relaxed, until he gets acclimated? the caregivers at the place will know best and will take good care of him.

God bless all PWPs and caregivers.

By flowers12 On 2016.04.20 00:09
I'm so, so, so sad to read all of the struggles we all have. Sometimes I feel so alone in this nightmare. I pray for patience and compassion constantly. He always took good care of me helping with everyting for 40 years. I can see how difficult and frustrating it is for my husband and every once in a while he will tell me he knows how hard it is for me to take care of him. It breaks my heart and I feel so bad that I get crabby with him. We've been going to physical therapy two to three times a week for two years. Now he seems to be really slowing down. Between helping him in the bathroom every two or so hours day and night and trying to do everything else I'm just at a point where I feel I'm going crazy. His dementia flairs way up every once in a while and he always thinks I'm going to sell the house and he says he doesn't trust me. I've been able to call his sister to come over and talk to him in these extreme times and that usually works. She only lives 5 minutes away but isn't any help on a regular basis. Usually when he gets confused I do like you say Lynnie, talk calmly and kinda go along with what he says and reassure him that everythings ok. I know I need to get some help. It seems like I can't have anytime to myself ever without being called for getting up or going to the bathroom. This has only been going on for 3 years. I'm scared to death about the future and how I will be able to keep physically and mentally healthy. I know this is not about me but about him and his darn disease I have to find a way to stop feeling sorry for myself. I miss my hubby, I miss being able to talk to him about things, shopping and sharing lifes joys and struggles. Life is harder than we ever imagined when we retired.

By Lynnie2 On 2016.04.26 19:08
Marilyn I know exactly how you feel.
It isn't easy and being a caregiver is a full time job. Who knew this would happen to us, eh? Good thing we didn't know and enjoyed the life we had before this awful disease.

I have been getting more help lately and my caregiver who is also a PSW (Personal service Worker) comes on Tuesdays and she had an opening as the 4 p.m. client was dropped, so I asked for 6 hours of her time (instead of 4 hours which went too fast)
. It costs $12 per hour, but my health is more important than money right now.
I also take him to the Day Away Program at the Alzheimer's Society on Friday's. I drop or take him inside I should say around 9:30 and pick him up at 3 p.m. so I have a pretty full day in the city. He has been enjoying the day (thank God) and they even serve a hot meal which he enjoys, so that night I don't have to cook a big meal.......
This week I am having coffee with a girl friend and then do some shopping.

Today when I had 6 hours, I went swimming and enjoyed the hot tub at our local town pool. Then I had a great shower and did my hair and then had lunch at Tim Horton's (have you heard of that place?)
I also went to the library to do some reading without being disturbed, but actually the library was rather noisy so I didn't get a lot done.
Maybe I'll go to our church where no one will bother me. lol.
Anyway, I know our husbands aren't the same and every day is a challenge, it seems. They seem to need our attention just when we have started something or trying to have some down time by sitting on the couch drinking coffee.
I am glad you have someone close to help a little but try to rely on friends if you can. You must know they want to help and maybe they are just waiting for you to ask them. Try to tell them if you can, how much stress you are under, and you would be surprised how they want to help out. They really have not idea what we are going through but helping you would be a big plus if you can get their help.

I read that we should get a wrap around team to help as we can't do it ourselves or we will end up in the hospital. So please Marilyn do yourself big favor and try to get more help.

I forgot to tell you that the supervisor of the Alzheimer's program will be starting a Caregiver's Support Group next month on the third Thursday of the month at our local nursing home. I asked my girlfriend and her husband to stay for an hour and a half while I go in the afternoon.

Take care of yourself and let me know how you are doing and hopefully getting more help.

By flowers12 On 2016.04.26 23:56
Thanks Lynn for your response. I'm just in a bad place and can't seem to see any light at the end of the tunnel. There is no joy or anything to look forward to. We moved here 6 years ago after living in the same place for 35 years. I have no friends here and his sister that lives here is so busy with her volunteer work she has no time for us unless it's an urgent situation. The occupational therapist we started seeing this month is very good and is trying to help me get the help I need. I don't know why I'm hesitant to get someone in to help us. I guess I feel like I'm letting my hubby down. I've asked him if he would mind having someone come in for a few hours here and there and he says that it would be okay. I'm so tired. I'm either getting up every 2 hours with him to pee or if he sleeps for 3 or 4 hours he talks and moves his arms around so much I can't sleep. I know I can do this, I can get some help. I will get some help. I will be positive. That's all we can do isn't it?

By Lynnie2 On 2016.04.27 07:42
You are not letting your hubby down and he seems to be okay with you getting help, so please promise me you will get some help.
I know how you feel and people kept telling me to get help and worried about me.
We also moved 6 years ago from the country but only 7 miles. away so I didn't have to give up my friends.
I see by your profile that you live somewhere in California and I googled
Parkinson's Support Groups.
parkinsons came up and listed all kinds of groups and even caregiver groups which you really need.

Look it up and see if there is any in your area. If it's a group that your husband could attend that would be good and maybe you could leave him at the table for a while and talk to the other spouses and make some friends that way. Or if you are able to attend just a caregiver group that would be good too.
I was also having issues with my husband wondering at night and he was hallucinating. The doctor gave me something for him to take at night which has help in some way.
He still gets up every 2 or 3 hours and I wondered why because he can go for 4 or 5 hours during the day and not pee.
The doctor said that we make more urine as night and it comes up from the feet.
I was wondering how much your hubby drink during the day and maybe if he drinks caffeinated drinks such as coffee or tea, he should stay away from them.
Try it anyway.
Our MDS said in our case there are 3 things working against him. Parkinson's, medication and dementia
Oh, I just thought of another thing you could look up. I am not sure if your hubby has dementia, but if so, there must be a Alzheimer's Society near you or in another town where they would have the Day Away Program similar to what my husband goes to. They don't have to have Alzheimer's disease, but the dementia is also one of the things that comes under that title.
Anyway, just a thought so starts looking around and get help, PLEASE.


By LOHENGR1N On 2016.04.27 08:47
Just as a quick aside caffeine and nicotine have been shown to benefit Us Parkinson's patients. If you quit either or both then be aware the Neurologist will have to adjust his anti-Parkinson's medication.

By mylove On 2016.04.27 09:00
Al, I vehemently second that comment. We have personal experience with that if anyone wants more info. Well meaning folks will want you to quit these "negative" habits, but in reality they are also providing some hidden benefits. Both substances potentiate and mediate Parkinsons meds, and if removed, the whole delicately balanced stack of teacups can come crashing down if you don't take that into account. Just a warning.

By Lynnie2 On 2016.04.27 09:02
I didn't know about coffee. His MDS never mentions or asks if he drinks coffee. He just ask about alcohol which he rarely drinks and then it would be only a glass of wine or maybe a bottle of beer.
Anyway, I was just thinking Marilyn should cut down on the liquids for him.
I actually have problems getting liquids in my husband. He rarely drinks water with his meals.

By moonswife On 2016.04.27 11:55
Linnie, and flowers I am so in step with both of you. Crabby is the word for me lately. This is what I posted on FB to update family and friends, and then the follow up to the story. "So we go to Catalina for a beautiful warm April week. Mike gets wild hair mode and decides to walk three blocks without a walker or take his wheelchair. Thinks cane is enough. Face plants in alley. Most of brunt of fall on left shoulder, which has had one rotater cuff surgery before because of fall down our stairs. Tells friend not to tell me. Until 2 am when he gets 7 pills from me. Tells me he is having a heart attack. NOT. Then he wants to go home on the 6 am boat. Tell him I cannot be ready by then, because people are sleeping in the beds I have to strip at our house for the cleaner I use to remake beds up. And there is 5 days worth of fresh food I need to deal with. So I do. At 6 tell him "we will take the 10 am boat". He says "no the helicopter". I explain that we cannot take 4 people, a wheel chair, a walker and 4 suitcases on the helicopter. Now he is mad, but has no choice but to wait. I am thinking the fall disturbed the leads in his brain. Friends get up, strip their beds. Call cab to Mole, get picked up by Gorilla Billy and drop both friends off at their cars and head to ER before noon. By 7 o'clock last night he was screaming for me to remove the IV lines myself so "he could go home". Left by 8 30 with a PROMISE to see his orthopedic surgeon. Today (when I am NOT on my much needed vacation) he says a miracle has happened and we do NOT need to see doctor. the PD getting his brain muscle, did the fall affect his thinking...or did he just want to go back to the garage and finish the last trailer? You choose, because your guess is as good as mine." ER for whole day and they send us home with a sling and directions to see surgeon that did 1st rotator cuff work. I look out the patio window the next day to see him lying under the convertible (on a floor jack) checking for a leak???? Yesterday the surgeon said...."Mike...light activity for a month and a new set of x rays before we plan more cutting"..."RIGHT"...she says doubting he will listen.

By Lynnie2 On 2016.04.27 13:24
I don't know much about your husband or if he's been diagnosed with any dementia, but the way he is acting, he could have the start of it.
My sister's husband who is 86 yeras has Alzheimer's, not bad, but again not that great at times.
Very often when they go some place, e.g. to a gathering, he says he is dizzy and wants to go home.
This has happened enough time and when he gets home he is okay.
My sister has come to the conclusion that if he doesn't want to do something, then he says he is dizzy or not feeling well.
Recently she went to a fish supper and they had a numbers game that she enjoyed doing and having fun with friends after the supper. She had been looking forward to it all week.
They just started the game and her husband said that we have to go home. She pleaded with him not to make her take him home, but he still wanted to go home, so they ended up going home. She was so disappointed and upset with him for a few days and I don't blame her because when they got home, he was okay.
Another time he complained of a pain in his right side, so they went to ER and took blood work, etc. and said they couldn't find anything wrong and they went home.
The next day she asked about his pain and he said "What pain?"
So you see how things work. I would suggest that if this happens with your husband if you can possibly stall or say we will see what tomorrow brings and if you feel ill, then we'll go.
Maybe it's difficult to do, and I guess with people who have dementia, you don't argue, but how can you not or at least try to talk them out of it.
I feel for you and hope you get some help so you can get a break.
It sounds like you need to go somewhere without him if possible.
I know my husband hasn't been the same since having part of his lung removed over a year ago. I think the anesthesia has caused this dementia to come on him. He was okay before they started biopsies and putting him under. The Anesthetist said that it could affect his brain, but we had no chose as to have the operation.

By flowers12 On 2016.04.28 00:03
There is a Parkinsons Group that my husband and I used to attend but then he didn't want to go anymore because he wouldn't understand everything said and then he would want to fall asleep. I did go to one or two by myself when he was doing good and when our son could stay with him. It got too stressful to leave and drive 1/2 hour to the meeting and sometimes get a call that he wanted me to come home. I tried attending the Caretakers group twice when it was possible but it was so darn depressing I just couldn't go back. My hubby had just started taking Aricept for the dementia and it made such a remarkable difference I was so happy then at the Caretakers meeting someone said "but you know that med doesn't work for very long". I could have cried and did when I went home. So I know how bad things can get but I just don't want to sit in a group where there is nothing but depressing news.

My hubby doesn't drink coffee or tea and he hasn't smoked for 30 years, may have a sip of wine once in a great while. His Urologist is giving him Myrbetriq to relax his bladder but it doesn't work very well. Sometimes he doesn't go for 3 or 4 hours in the day and that's a mystery why. He has orange juice for breakfast and usually drinks a can of Light Lemonade over the day and sometimes he has milk for dinner.

I have given some thought to using the external catheter for men. Has anyone had any success with it?

Today was an example of the difficult times. My hubby was fine at breakfast, slept off and on then after lunch and his meds his dementia showed up. He wanted to walk all over the yard and check out everything and said someone was going to kill and that was not good. We were up and down in bed and out and then we sat down to watch a movie and he was okay again. Now he's in bed for the night, or a while, and all is well.

By Lynnie2 On 2016.04.28 09:08
I know what you mean about the Support Groups in a way.
When my husband was first diagnosed we went to a Support Group. I should say I went mostly because he didn't enjoy it. They had a monthly meeting where they had speakers, etc. and another month they had a lunch meeting where we met at a restaurant in a separate room.
He found going too depressing as he saw people worse than him.
I kept on going but most of the people were in couples and I felt a little separated in that way, so I quit going.
They also had an exercise program where he could have attended but wasn't interested.
My daughter mentioned the other day that Dad never took hold of the disease and tried to fight it. It seems that he just gave in. Other people try to do things to help, but he never did.
She is right. I tried to get him to do exercises at home and to pay attention to his posture, but he didn't.
Now he is bent over so that's the result and it's too late.
He used to be in cadets when at teenager and had an excellent posture, and he has lost weight over the years and strength, so he isn't the same.
It hard to see them go down hill that way.
Anyway, to get back to the support groups. I am hoping the caregiver support group they are starting around here is helpful and not to depressing. I think we need each other, don't you?

My husband takes a pill to help him sleep better and not wonder at night.
If you want the name I can look it up.
It has stopped his excessive hallucinations and not wondering around at night which was really difficult.
My husband just drinks water and a little coffee, so maybe you should try just water for a while to see if the sugar in the drinks in affecting him.
Have you had his blood sugar tested lately?
Anyway, I am no doctor, and everybody with PD is different and it isn't a easy life to go through.

I don't want to think about the future, but I can see some day he will have to be put in a home, especially if the dementia get worse and I can't handle him and that is a frightening thought.
In the meantime we just go from day to day and make the most of it.

If you don't get help in, please do because you can't do everything yourself.
Take care,

LYNN :>;)

By lurkingforacure On 2016.04.28 11:22
Lynn, that is interesting what you say about your daughter's observation and your husband seeming to give in. We are dealing with that as well, and I find it to be one of the most frustrating things in this journey.

My husband, who is mobile and dresses/feeds himself, all of that, CAN do so many things to help himself. He can also help around the house, and he could even also help with the kids. But he does nothing, and i mean nothing. He will literally sit and watch me vacuum and mop the floors, prepare meals and kid's lunches, do laundry, put away groceries, clean the toilets, help with homework, take the kids everywhere for everything, etc. and etc. I could handle all of that more easily if he would at least make some effort to exercise, stretch, do yoga, etc., but he won't.

All of this is not lost on our kids, sadly. They see their dad making no effort to help himself, much less help around the house, and you can imagine how that makes them feel. To top it off, my husband stalks around the house, staring at them when they try to study, read, play a video game, whatever, just standing there, silently staring. It creeps them out and they cannot work. They will ask him to please stop standing and staring, but he doesn't stop. Our oldest has literally had to pack up her books and leave the house to go study at a library countless times over the past two years. It's an absurd situation, but what can you do?

Our kids have increasingly withdrawn from their dad over the past few years and when they do converse, it is superficial and terse. I mourn the fatherly nurturing they are not getting, the supportive relationship they could have with their dad but don't, the memories he could have been making with them, and still could make, but hasn't and won't.

I've had to accept that my husband is simply not going to do what he doesn't want to do....even if that creates an unhealthy and dysfunctional environment for our kids. This has been such a difficult realization to have to accept, and to me, is almost harder than the PD dx itself. That makes me so sad, because a parent is supposed to put their kids first, even when they are sick.

By LOHENGR1N On 2016.04.28 12:42
Just a couple of quick thoughts. For years many Parkinson's patients have been called and labeled malingerers. Saying they didn't feel well and using that as an excuse to not do something or get out of doing something. This is not the case most of the time (there are exceptions to everything). If He is feeling dizzy or pain he just might be. stress makes symptoms worse, anxiety, pain, dizziness. If He is stressing (which in some cases feeds off a oh-no everyone is going to see my tremor or what if I stand and collapse on the floor in view of all here?) a not being comfortable with everyone seeing my worst, building into a panic attack a lets get me out of here before I fall all apart sensation. Of course getting out of there removes that stress and in a couple of hours without that stress We begin to feel better. To any observer it looks like We're faking just to get out of whatever or wherever just because we didn't want to be there and not knowing the problem is real and if removing it we will feel better. A situation where We are trying with everything we have to hang on and concentrating on holding it together when asked if the problem was abating we may say huh? What problem re-enforcing the opinion of faking. To another they looking at it from a "normal healthy" non Parkinson's view it is easy to feel the problem is faking but from inside looking out from a Parkinson's patient's view it is real, it is scary and we cannot explain this because we are using everything we have to try to hold on and not breakdown. This roughly, basically is what happens to Us, take it from a Patient who has and is living this, has lived it and continues to live it. It is easy for some to jump to the conclusion they're faking just to get their way and advise to hold your ground and make/force the patient to stay in the stress like we're a naughty selfish child wanting to get our way. As I stated we are not.

Lurking the staring or glaring could that be facial masking? Many taking masking for apathy, anger, staring can be quite un-nerving and often misread by adults who have been together for years let alone to adolescents (I imagine it could seem really creepy at times). If it is he cannot help it, now that doesn't make it any easier on you or the children but maybe you could sit them down and explain it to them and work on reminding each other it is masking and part of the disease? I really hope You and the Children can work this out and get some sort of relationship built up with their Dad and your Husband.

By flowers12 On 2016.04.28 13:15
The standing and staring is really hard to deal with. I've been trying to find ways to distract my hubby when he does this. I suggest a walk or the most likely thing that works is I have a medium sized ball that we toss back and forth. As soon as I bounce it to him he automatically reaches out and catches it. Have you found a Big and Loud exercise program anywhere near you? We live in Redding, CA area and there wasn't anything available when we first moved here. We have to travel to Sacramento to the neurologist and he told us that there was a new program starting up at one of the Physical Therapy places. Medicare pays for a portion and our secondary covers most of the rest. It has made a huge difference the first year in his mobility. This is the second year and he's having more difficulty but it still keeps him moving. The daily exercise is so very important for their mind and body and I'm fortunate that 90% of the time he's willing to do it. I also purchased a speed/punching bag that hangs off a door and it's amazing how he can stand there and reaching up punch that bag. I've gotten neglectful lately in making sure I get him to exercise every day but we go to the therapy 2 or 3 times a week. It's just hard to do everything. Being able to dress and everything on his own is a blessing. Everyone with PD is different and all we can do is try different things. I can't imagine how difficult and emotionally draining it must be for you to have children to take care of too. Right now I feel positive, it's first thing in the morning and he's eating breakfast. I pray this will be a good day.

By lurkingforacure On 2016.04.28 13:34
Al, I really appreciate your input, and know that all of what you say is true. Our problem is that my husband won't help himself. He can, but won't. It's like he just sat down several years ago and said "take care of everything and let me know when you find me a cure".

Our neuro recommended the Big Therapy back in November. My husband flat out told me he didn't want to do it, and would not go (I was actually on the phone making the appointment for him when he told me this!). Again, I can't make him do something that he doesn't want to do, even those things that most medical professionals agree would help him.

I'm so exhausted from trying to take care of everything (badly, I might add) that I just cannot keep making him try to exercise, stretch, practice his balance, etc. When I've asked the kids to help encourage him to exercise, boy has he ever gotten mad (at me as well as them). So I have had had to let it go. Our whole family suffers the consequences, though, which isn't fair to our kids.

By flowers12 On 2016.04.28 13:58
Lurking, I know how you feel, it's so depressing. Some of us have more to deal with than others, all different things, so overwhelming. I know that the meds make my hubby zombie like often. I asked the neurologist if there was a different med but he said that there really wasn't anything different out there. With so much research going on you would hope for something better. I'm just so scared about the dementia meds not working anymore. We just increased the dose by a half two months ago but I can see he's having more and more dementia issues. I don't know what I will do if things go back to where it all started with hallucinations and aggitation and mistrust.

By flowers12 On 2016.04.29 21:55
Does anyone know about the med for dementia, Aricept/Donepizil? My hubby has been on it for two and half years and now it just isn't working. This week he has had bad spells every day. It scares me because he gets so agitated if I say or do the wrong thing. It's so hard to not show my aggravation when he tells me over and over that he needs to get to the job or needs to pay his men that work for him. I try and try to be calm and reassure him that everything is ok and he doesn't have to worry about work because we are retired and don't have to work anymore. What do you do when things go this way? I hope I can keep him calm so he doesn't get out of control. I don't know why something like this gets so bad on a Friday night when I can't call his doctor. But there probably isn't anything the doctor could do anyway. Does anyone give any kind of sedative to their person when they get like this?

By moonswife On 2016.04.30 07:48
Interesting to us that the conversation about Aricept was raised yesterday at a neurologists office. He was Mike's original Dr that diagnosed first the essential tremor and later the PD. He now runs a "Dementia Clinic" for Kaiser in Southern Cal. one day a week. He is very current on the subject and said a study that came from a researcher at a Veterans Hosp had observed that patients put on Aricept/Donepizil for dementia, that also had PD, had improvement in their balance, and steadied walking. After reading the recent posting here, and the sudden turn around after 2 years, I am less anxious to fill that Rx today. But like the sage Al would many variables are possible, maybe not working after 2 years was a result of something else. He was cautioned to start with a half pill once a day at dinner, so if it made him sleepy, it would not matter. Still tryin'

By flowers12 On 2016.06.02 00:06
Out of sheer desparation I made an appointment with the caregiver resource center to get some help. Because they will be at a conference this week I have to wait until next week. If I don't lose my mind by then though I'll be very lucky. I was told that there are a lot of options for respite and other help. My hubby is a veteran and I guess there is some help available thru the Vets. This has been the most stressful few days. I'm ashamed of the way I've reacted to everything. Crying and feeling like screaming. I can't understand what he is saying and I have to ask him over and over what he said. He's become so slow that I'm a wreck trying to get him to sit or walk to the bathroom. This morning we went in the bathroom and he decided he needed to sit down but he couldn't get his feet to turn so he didn't make the toilet and I had a mess all over the floor and another shower to give him. I sometimes just don't know how anyone can do this 24/7 day after day. I love him and keep telling him I'm sorry, I have no patience. He made me laugh tonight when he told me not to take it so personal. I hate this disease so much and there is nothing we can do to make it better just wait for it to get worse. When I read some of the other peoples posts here I know some have it harder than I do. We all have our struggles and times where we can't cope. I'm so looking forward to having some help even if we have to pay for it. Just to be able to feel free for a couple of hours will be wonderful. I can catch up on my sleep maybe. I need to find out how the screening is done when getting someone in to help.

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