Sleeping all the time

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Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 412
   Posted 1/3/2010 5:24 PM (GMT -6)   
Happy New Year everyone. I'm just trying to be optimistic even though I know each new year brings more downhill situations. Last I wrote in, my mom was given galantamine 8mg. She took it for 2 months and showed no signs of improvement. She started to sleep all the time. Her doctor then took her off and said we've run out of drugs for her to combine with Namenda since the others gave her other side effects. I thought my mom would be more alert once she was taken off of this medication but I was wrong. The only time she's awake is for her 3 meals. Well not for the whole time anyways. She's closed her eyes and fallen asleep eating her cereal before.

Yesterday was a beautiful day (I live in Los Angeles) so I took her to the park to take a nice walk. She was dragging her feet and even closed her eyes during the 15 minutes we spent there. I then pulled her back to my car which she didn't want to cooperate and sit in the car fully. I spent another 10 minutes trying to scoot her in far enough so I could close the door and put on her seat belt. I then took her for a joyride for about 45 minutes. I just didn't want her back in the house and in her bed yet again. She dozed off and on and when she would wake up she would jolt suddenly and try to unlock the door to get out. I was so frustrated and finally told her that if she took her seat belt off I will crash my car. Since my mother is terrified of dying (she's scared of most everything these days) she then sat still.

What can I give her to give her more energy? She currently takes Stalevo/Mirapex/Namenda/Norvasc and has been on the same meds for over 2 years. I'm scared to think her brain is shutting down so that's why she's sleeping so much. Nothing seems to stimulate her. She sits in front of the TV and will nod off there too.

Another weird symptom she's had recently is watery eyes. I first thought she was crying but she said it hurts to open her eyes sometimes so she closed them and then tears drip down. Once her eyes closes then she just falls asleep. I love my mom dearly and I feel so helpless to see her get worse. It's like watching a very slow moving tragic movie.

Linx
Regular Member


Date Joined Nov 2009
Total Posts : 82
   Posted 1/3/2010 5:56 PM (GMT -6)   
Hello,
Just a thought but when was the last time you had blood levels done on your mom? how about B levels chem panels. What are the doctors telling you about her? Maybe she needs less medication if possible......Not knowing your mom it sounds serious and like over medicated maybe.....try talking to docs.....

Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 412
   Posted 1/3/2010 6:34 PM (GMT -6)   
Her last blood test was normal. It was done about 7 months ago. I actually thought she was under medicated for her parkinson meds because she's shaking now and then somewhat usually when she's nervous. I know the medications will make her sleepy but without them she would be shaking violently. I read articles that say drinking coffee will make the brain active but it just makes her worse because of her parkinsons. My mom was drinking up to 8 cups of coffee in her mid 40's to 50's and still she has dementia and parkinsons. What do experts know? Is there a cure for any disease out there? Just think about it. If there were then there will be a lot of researchers out of work and pharmaceutical companies out of business. They don't want that to happen so they keep getting grant $ and lead the public on with their slow findings.

EVERYDAY I tell how to wipe herself after she urinates but to throw it inside the toilet but she never does. She even holds it for a minute inside the bowl while she's still sitting there or she throws it to the ground. She also likes to play with water. She's constantly turning on the faucet and then leaves the bathroom with the water running. I went out to do a quick errand once and the water was running at full blast. She also keeps herself busy by touching her comforter at her bed. It's like she's making her bed but she's not. She's just flipping it up and down and then touches the corners. That's how she always ends up peeing before she reaches the bathrooms. She's too distracted to go so in her head she wants to play with the comforter but her body can't hold it any longer. It is beyond frustrating. Sometimes I don't think she knows what I'm saying to her at all.

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 1/3/2010 8:34 PM (GMT -6)   
Therepudic Galentimine is 24 mg a day.......I have vascular dementia & take 16 mg a day & it works you just need more time with a higher dose & get a new Dr........Try her with some depends or Assurance from WalMart they are cheaper than depends...


SnowyLynne


Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 412
   Posted 1/3/2010 10:34 PM (GMT -6)   
I read that it can cause heart problems. Is that true?
We don't have too many neurologists near where we live so we are stuck with her.
She would put my mom back on if I ask her to. I just don't know if it really works on her or not.

Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 412
   Posted 1/3/2010 10:36 PM (GMT -6)   
As for the diaper solution, we don't have assurance at the Walmart by us. I also found an easier solution. I have her wear her underwear still and have the diaper over it. This way the diaper can stay clean if she doesn't have an accident and can still wear the same one over and over again since it has the underwear as the extra layer. The underwear can be washed.

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 1/4/2010 3:07 AM (GMT -6)   
I have no heart problems & I've been on it nearly 9 yrs now......When she starts having bm's then you'll get rid of the panties & stay with adult pull ups.......They can be thrown out....
SnowyLynne


Red_34
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Date Joined Apr 2004
Total Posts : 21768
   Posted 1/4/2010 6:28 AM (GMT -6)   
She can have Dry Eye syndrome which is why her eyes are tearing up. It can also be why she feels tired all the time. I have Dry eye and when my eyes act up, all I want to do is close them and for some reason it makes me sleepy :) Also too, with AD sometimes the mind gets "set" on one thing. Sort of like a broken record and sleeping may be hers. It can also mean that her mind's way of coping with the ever increasing confusion around her. Her sleeping a lot can be from so many things.
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Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 412
   Posted 1/4/2010 1:08 PM (GMT -6)   
Thank you all for your input. I just called her neurologist and she will put my mom back on the medication since it doesn't seem to be the reason for her sleepiness. My mom does have eyedrops for allergy. I will contact her family doctor to see if dry eyes may be the problem instead.

Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 412
   Posted 1/4/2010 3:17 PM (GMT -6)   
SnowyLynne:

How do you know that the drug is working for you? Have you gone off of it before to notice a difference? What I mean is do you think it's the drug that's making you function so well all these years or maybe it's something else that's working or just your healthy lifestyle. I asked the neurologist if there was something my mom can take to wake her up and she said there is but that drug will just cause more side effects. What a shocker huh?

Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 412
   Posted 2/27/2010 11:43 AM (GMT -6)   
Update - my mom is officially off of Galentimine a month ago. She developed urine retention where she would pee only after 10 hours of holding it in. Then.. pee in her diaper when it was time to come out. Speaking of diaper, I got her the kind from Walmart and they work pretty well. Thank you for the suggestion.

I bought an inflatable ball and have been tossing it around with her while she sits. She seems to enjoy the exercise and her coordination is pretty good. She was having trouble getting up from a sitting and flat position so I had her doctor increase her Mirapex dose by .25mg and it's working.

I've had a really bad cold for the past week and unfortunately being my mother's only caretaker means she gets it from me too. It's unavoidable.

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 2/27/2010 4:17 PM (GMT -6)   
I have been off the drug a month,& i really noticed a downward spiral,but sfter going back on it WALA!! i'm back to where I wuz,lol.....
SnowyLynne


Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 412
   Posted 2/27/2010 4:50 PM (GMT -6)   
Everyone is different so I'm glad it really works in your favor. Now you know it does work for you. Nothing seems to work for my mom. I tried to get her off of namenda many times but I'm never really sure if it's the drug that's making her a bit normal than usual or she would be like this anyways.

Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 412
   Posted 3/3/2010 11:25 AM (GMT -6)   
You are a terrific daughter. I wish I have the patience to take my mom out like you do. My mom falls asleep taking a walk at the park so that's an experience that I don't want to go through again while we were pretty far away from my car to walk back to.

She has this annoying habit of NOT wanting to pee in the toilet. Whenever I try to help her take her pants down she grabs hold of them for dear life and pulls them back up. I go through this with her about 15 minutes in the morning before we leave in the morning to her daycare center and me to work and then again before bedtime. I get to the point where I just scream and cry from the lack of cooperation from her. She can hold it in for about 8-10 hours. My fear is of her having an accident in her underwear even though I have her diapers to bed. Still, I don't want her to think it's ok to let it out there and not go to the bathroom anymore.

There are only so many meds out there for dementia. She's tried them all and the side effects is worse than what it's suppose to help so Namenda is the only one she takes. I've aged a lot in the past 5 years and my health has gone downhill. People always say to take care of yourself first but let's be realistic and know that there is not enough time in the day to pamper myself. If we are both sick at the same time I doubt I'll go take medications that will make me sleepy and go sleep it all leaving her alone. So... I just suck it up and let the illness run its course and force myself to go on.

Anyways, I think you do a great job and because of this, your father will be around much longer and you will be happy that you provided this great secure environment for him.

BrokenDaughter
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/30/2013 7:37 PM (GMT -6)   
Hello Bella..
FIRST OF ALL I WANT YOU TO KNOW THAT YOU ARE A VERY STRONG, WONDERFUL DAUGHTER.
SECOND IS I Know exactly what you are going through. sitting here and reading your words felt as if you are living in my home. for the past for years i have felt so along, so confused, so sad, and not to mention of frustrated. for the very first time ever i feel like im not alone and that's because of you SO THANK YOU .... the only difference is im a stay at home mom with two small children. my baby boy who is six years old has autism. My mom was a very very very strong woman and now she is like an infant. its so heart breaking and sad. everything you said i have been through. until a month ago we was not sleeping at all. she would be up for days. she uses the bathroom all over the house, i try to keep up with her but as soon as a get a little busy with the kids, she pee pees everywhere and also does number two and then she puts it on the walls or in her mouth and eyes and hair. at times i feel like im about to loose my mind.


Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 412
   Posted 3/13/2013 3:23 PM (GMT -6)   
I'm so sorry but I didn't know about your reply until now. How is it going at your house?
You have it way tougher than me. Life really is not fair. My sister has a great life and of course that being said she will not disrupt that and help me more with my mom. I'm tired of complaining to people about her. It is what it is. I was put on this earth to take care of my mom and seeing what the alternative is (nursing home) I rather do it alone and be happy knowing I was there for her and got to spend time with her.

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 944
   Posted 4/2/2013 9:50 PM (GMT -6)   
I stopped coming to this forum a while ago because there were very few people here. It seems there are more here now and I love the support. My mom was diagnosed almost ten years' ago with Alzheimer's dementia. It has been a VERY long, frustrating, depressing, extremely sad journey. When she was first diagnosed, we tried to keep her at her place which was only one mile from my home. But the phone calls began, many times a day, begging me to come right away, the TV doesn't work and I'd run there and find she took the batteries out of the remote and stuck them under the recliner seat and then deny doing it. We went through this for about five months until she asked to move in with me and of course, I took her in. I never really asked my husband, after all, this is my mom, what was I to do? By the way, I do have two sisters that live locally. Mom lived with me for a year and I nearly lost my mind. I gained 35 pounds and developed SO many health issues including having to have angioplasty. I finally realized I couldn't go on like this. My sisters both refused to take her so I looked for a place for her. When I found a place and the night before her move, one sister stepped up and took mom for 3 and 1/2 years. From there, mom went to assisted living, a lovely place, where my other sister works, she is an RN and so she could watch over mom on her evening shift. Now, just last week, we moved mom into skilled nursing. She has run out of money and I had to apply for Medicaid. We are very fortunate that the facility is really a lovely place where the residents are taken care of very well, but...it is still a nursing home and she is on the alzheimer's dementia floor. I find it really disturbing seeing all the people with dementia and most of them are functioning at a lower level than my mom. Mom has been on Aricept and Namenda since her diagnosis and I believe it has kept her from declining too rapidly. She has definitely declined. There are many times that she has no idea who I am, she becomes VERY confused. All she has done for the past four years is lie in bed listening to the TV, that is it. Even though she was at a facility that had social activities all day long, she refused to participate. I am not sure if she is sleeping or just lying there with her eyes closed, listening to the TV. She has trouble with too much input, causes confusion.
My mom turned 91 in January.
I try to tell myself that she is happy. She made the move from assisted living to the skilled nursing facility amazingly well. It was last Thursday. Since then, she is now showing signs of more confusion and anxiety. I am meeting with the psychiatrist tomorrow and the physician to discuss her medications. Hopefully, she will settle in soon.
I am ashamed to say this, but the most difficult thing for me to do is to spend time with her. I visit her very often, at least four times a week, sometimes three times a week, but I do not stay for long, usually 1 and 1/2 hours. The repetition just gets the best of me, she wears me down. She also says things that bring back some pretty awful memories of when I was young. Mom was a holocaust survivor and came away from that with such tremendous rage which she took out on her children. we were verbally as well as physically abused most of our childhood. Worse than that, we were ignored. Believe me, I understand it as an adult, the horrors she experienced, just cannot imagine what she went through, but as a child, all I knew was I never felt loved. She took care of us, but didn't know how to nurture. My dad died when I was only 13. So now, when she says things like "you are good for nothing" I really have a hard time with that. I do understand she doesn't mean it, it is the disease talking and I don't hold it against her. I am there for her and I will continue to be there for her. The facility is less than ten minutes from my home, so I have her close to me and I can keep a watchful eye over her, letting the staff know that family is very involved.
Sorry this is so long and thanks for letting me get my feelings out,
Miriam xoxo

Irish Babe
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Date Joined May 2007
Total Posts : 1306
   Posted 4/4/2013 9:58 AM (GMT -6)   
Miriam,
 
Your post just brought me to tears. I just feel so bad about the whole situation. I'm so sorry for what your mother has gone thru, I feel so badly about what you have gone thru. None of it was easy for either of you.
 
I know it was hard for you to share your feelings, but I'm glad you did. I tend to let things build inside of me and it effects my health, too. I think we need to release things that upset us or make us feel ashamed. We each have reasons for feeling something, even if others don't 'know' or 'understand' the reason. Many family relationships are so complicated and hard for outsiders to understand. It is hard for us to understand, and we are living it.
 
You have been a very good daughter, even under trying circumstances. You are a very good woman. Remember that, pls. My prayers and thoughts are w/ you and your DM.
 
God bless.  Alice.

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 944
   Posted 4/5/2013 10:05 PM (GMT -6)   
Thanks so much Alice, for responding and letting me know your feelings. This disease is SO difficult, especially for the family members. My mom is very aware of her memory loss, at least most of the time. It is so strange to hear her say "I'm sorry, I don't remember. That is my problem. My head is empty." I can't help her. I can't fix her. Yes, I can love her and care for her. It's SO hard to just sit and watch her fade away. I believe it was Nancy Reagan who called it "the long goodbye"...it certainly is.
blessings,
Miriam
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