It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-08-2012, 09:09 PM   #1
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Sleeping to get away...

My FIL is in severe stage now but stable. He now can use the walker badly with people's help or hold on to the wall in his room to "walk out" of his room for attention in the early morning. By the time he finishes lunch, he gets on the wheelchair because he cannot walk that far with the walker. So it is like only 4 hours a day he is "walking" or "alert".
In the rest of the day, he is like sleeping or very idle.
I understand the meds make him sleepy a little bit, but it is so obvious that every time he does not understand something or feels too difficult to blend in, he immediately lowers his head and close his eyes and ends up sleeping if he has no more interest unless someone motivates him...
He is like that before. When he didn't want to socialize and yet we put him in the activity room, he lowered his head and closed his eyes!

I know he sleeps more too. But now it is so obvious that I feel it is like a signal. Everytime he does not know the photos or something, he lowers his head and closes his eyes. If something interesting happening, he opens his eyes. If it is so boring, he sleeps all the way...

He is at the point that he can no longer initiate talking and understand his surroundings. He still knows his son as his "colleague" of some sort that is also family... He does not seem to know me well anymore. He forgot it all...
No more career talk... The only thing he said to my husband concretely today was that my husband's eyeglasses looks good.

My husband said he wants to go there very early one day to see how alert his Dad is. Well, it would be like in Sept/Oct last year and I am not that excited.
My FIL is no longer actively pursuing his own interest although he likes girls and kisses their hands... Some caregivers even kissed him too saying he was such as good patient...

The thing is we all know he sleeps because he wants to get away from the confusion and hard time. He has a hard time to express so he turns it off and closes his eyes...

He is shutting down slowly. It is like a slow goodbye... Sad to see that he has to close his eyes to get away from the confusing reality.

Nina

Last edited by ninamarc; 01-10-2012 at 12:21 PM.

 
Sponsors Lightbulb
   
Old 01-09-2012, 06:15 AM   #2
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,155
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Sleeping to get away...

Please do not get agitated because your FIL can not function in your world. He is doing the best he can. The further into this disease he is... the less he will be able to connection. When life gets completely and totally out of control and we have no way to fix it... we want to just go to bed and pull the covers up over our heads. Why should he not be allowed that same feeling? The difference is that we eventually find a way to cope with the chaos... he can't. It's not a conscious choice... it is the only thing he knows to do. When ask who is in that picture, he doesn't know, so he retreats into his safe zone. If the noise level and intensity is too much in the activity room, he will retreat into his safe zone. If he is content there then let him be! Many times trying to drag them back into our world will create agitation on their part.

Beyond that, as the body begins to shut down they just sleep more. I have noticed this with Mom. The lady that paced 20 hours a day now naps in a chair in the afternoon and sleeps well at night. This is not a bad thing for Mom even though I do know it is a down turn in her disease.

Expect him to continue to slow down. Dad got to the point he didn't want to get out of bed at all. Leave them in their comfort zone

Love, deb

 
Old 01-09-2012, 08:33 AM   #3
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Sleeping to get away...

Deb, I know it is the disease. Yet we are human and we tend to respond like the usual. I know that my FIL is doing the best. At least he is not violent or pushing us away like that. I can tell that this time he is more agitated and even bothered when he tried to talk to my husband and then he got agitated and shut up. (My husband could not understand what his Dad tried to say.) He can still try to get cookies and his cup if he is thirsty.
He still does not want to wet his diaper. He thought the gas means he needs to urinate and etc. For twice we saw, he went to the bathroom for nothing.

In a way, he is still alert if people can bait him enough with interest. No, it is not like we cannot wake him up. He wants to be alert but we have nothing interesting to offer. The girl from the computer co. is able to show him the photos in his own account! He loved it with her!! It is about the girl. Not the photos. (We uploaded the photos.)

My husband tries to make him see things interesting. We moved his wheelchair with him on it and gave him a stroll. But he can no longer walk and talk properly so he closes his eyes. He enjoys some stroll at times.
He smiles secretly if he sees me ahead of his chair... He smiles when he sees us.

I feel sad for my husband who tries to alert his Dad. But my husband does not want to call his Dad. I guess he has his own way of dealing with his Dad. My husband was trying so hard to seek for his Dad's attention.
The good part is my FIL no longer asks for impossible tasks from us. No more ridiculous work... I guess it is the way it is. He is still the same arrogant professor. He cannot act as a professor anymore but he is still the same guy with pride.

He is now like a baby learning to walk the impossible walk and like a baby ignoring people like that.

Nina

Last edited by ninamarc; 01-10-2012 at 12:22 PM.

 
Old 01-09-2012, 02:08 PM   #4
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,155
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Sleeping to get away...

Yes, it is difficult to see and deal with Nina but it is what it is. They can't come into our world. They will shut out what is confusing and distressing to them. It is what it is.... and we have to accept it. We can try to present information that they can grasp and enjoy but if they do not accept the input we can't change that. Mom no longer makes sense of her portfolio pages but she smiles when she sees her baby doll. She no longer shows an interest in pictures but she will brighten when she sees her great grand children. I still get a smile when I offer her a cookie but she no longer knows how to stir the cookie dough. Try disease appropriate stimulation.... Such as ice cream

Love, deb

 
Old 01-09-2012, 04:11 PM   #5
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Sleeping to get away...

Quote:
Originally Posted by Gabriel View Post
Yes, it is difficult to see and deal with Nina but it is what it is. They can't come into our world. They will shut out what is confusing and distressing to them. It is what it is.... and we have to accept it. We can try to present information that they can grasp and enjoy but if they do not accept the input we can't change that. Mom no longer makes sense of her portfolio pages but she smiles when she sees her baby doll. She no longer shows an interest in pictures but she will brighten when she sees her great grand children. I still get a smile when I offer her a cookie but she no longer knows how to stir the cookie dough. Try disease appropriate stimulation.... Such as ice cream

Love, deb
Deb, you miss my point. It is not about acceptance or what.
If we just need to feed him ice cream and baby him, frankly we will leave him alone in the NH and we do not have to visit him.
We just try to save him some dignity. If he has no response, of course we won't bother. If he likes the girl and looks at the computer with pleasure, why not??? We just try to do what we can do as a family. What the caregivers can do such as bathing, feeding and toileting, we won't bother with it.

Nina

Last edited by ninamarc; 01-09-2012 at 04:13 PM.

 
Old 01-09-2012, 05:32 PM   #6
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: highland park, il 60035
Posts: 2,484
debbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB Userdebbie g HB User
Re: Sleeping to get away...

no matter what u think, i still thinks he likes your visits. how can one go thru the mind or brain that is sick. there are so many days i wish i could put my head down and go to sleep. the brain is demented so i hope you can do all you can. i so know it is easier said than done. its in gods hands. i dont think anyone really wants to be so alone. my thoughts are with you.

 
Old 01-09-2012, 06:32 PM   #7
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,155
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Sleeping to get away...

Nina, I didn't say just feed him ice cream. I am saying be observant to what he responds to and what he does not respond to. Then you will know what will bring him out of his sleep. Don't limit yourself to what he used to like or what he used to do. Expand the horizons.... and know at times nothing will work. That doesn't mean you don't need to visit.

With Mom there are times that I do what the care givers are supposed to do. I have showered Mom recently, taken her to the bathroom, and feed he frequently. I like that connection with her. Perhaps that is my background sneaking in But that is what is right for me and may not be right for everybody.

This is an individual disease. Each loved one is different and each family member is different. There are not right and wrongs.... just trying to do the best possible. Yes, I was berated for buying my Mom and baby doll but seeing her eyes light up when she carries it around makes it all good. So do what you find is right for you FIL..... Just know there are times when nothing is right and he is going to shut down because of the fog he is dealing with.

Love, deb

 
The following user gives a hug of support to Gabriel:
luyingjie (01-24-2012)
The Following User Says Thank You to Gabriel For This Useful Post:
luyingjie (01-24-2012)
Old 01-09-2012, 09:43 PM   #8
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Sleeping to get away...

Quote:
Originally Posted by Gabriel View Post
Nina, I didn't say just feed him ice cream. I am saying be observant to what he responds to and what he does not respond to. Then you will know what will bring him out of his sleep. Don't limit yourself to what he used to like or what he used to do. Expand the horizons.... and know at times nothing will work. That doesn't mean you don't need to visit.

Love, deb
That is exactly what I am trying to say. Do what we can to see if he responds. If not, let him be...
I am not saying I won't do the caregiving thing, I am just trying to say we do something that the caregivers cannot do and that is why we are there - to do what they cannot do. If we just do what the caregivers can do, there is nothing else to do for him. I would like to think that he likes to be with us so we try to do the things with him if he smiles and etc.

Hugs,
Nina

 
The following user gives a hug of support to ninamarc:
luyingjie (01-24-2012)
The Following User Says Thank You to ninamarc For This Useful Post:
luyingjie (01-24-2012)
Old 01-10-2012, 09:16 AM   #9
Registered User
(female)
 
Join Date: Dec 2011
Location: Bedminster, NJ
Posts: 142
Suzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB User
Re: Sleeping to get away...

Please do not be angry with me for what I am about to post, because it is something that our family has recently gone through too.

But.... I think that with the best of intentions, you are maybe trying to push him along too hard to participate in activities or involvement.

Also, there may (or maybe already has) come a point where all you can do is feed him ice cream and baby him, and that does not mean your visits are not worthwhile for him. They might not be rewarding for you, but that does not mean they are not rewarding for him in some way.

I am not saying you should attempt anything, but I agree it has to be "disease appropriate" and if there is not interest or agitation, then you have to back off.

As my aunt is slipping rapidly, many family members are having trouble understanding / accepting that her responses, interest, participation, etc. is not the same. It can be very upsetting when it happens - but there are often reasons we don't know or don't understand.

For example, I often visit my aunt right after lunch and she used to enjoy it. One day when I did so, she found it very agitating because that is when the residents gather in the community room for TV and activities, and she preferred to keep her schedule. I knew that i would never be able to convince her with reasoning that the residents would be in the activity room for the next 4 hours and I would be gone in 30 minutes so we might as well visit and then she could go back to the scheduled activities. So I adapted to her new needs and now I visit her at the end of lunch, when other residents have visitors too. Is it as rewarding a visit for me? No, definitely not, but ultimately this isn't about me, so I make it work. As long as she seems to enjoy it I will go.

However, there are times when visits can be agitating and you have to respect that too. Sometimes visitors agitate her very much, and we finally realized that she no longer remembers then, or has them confused with other people, and in that case, the person really would do well to just bail out quickly, and not take it personally at all.

Lastly, even if it turns out that my visit has to be cut short because of agitation or there is no response, I think it is still doing a service because I am "checking up" on things... admittedly somewhat stressful, but a manageable kind of stress and at least there is a potential benefit to her by making sure that things are in order.

I know it is hard, but, I think these are some things to keep in mind.

 
Old 01-10-2012, 09:29 AM   #10
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Sleeping to get away...

Suzi,

The home also has its own program to "push him" , if I put it your way.
The computer stuff is offered by the home and its affiliation. I cannot stop the girl from trying to ask him to look into the computer. He indeed responded to her talk because he likes her as a girl.

It is the home that tries to make him walk in the early mornings and put him in the wheelchair at lunch.
It is my husband who has a little hard time to understand.

I myself don't bother to wake him up. It just annoys me although I understand. We don't exactly have a wonderful relationship. My FIL is a selfish professor who put his own interests above his kids and family.

However, in terms of human right, I understand we do need to respect his situation. But like I said, if he does not like it, we leave.

We always leave when he has enough. He is happy to see his son.

You see, the thing is you assume he has nothing inside. How do we know? If he does not like it, we just leave him alone.

Do you understand what I am saying? maybe I should stop posting about this issue as people misunderstand me. My FIL is not a regular elder - he is too intelligent to be totally off. So he is not 100% off yet.

Nina

Last edited by ninamarc; 01-10-2012 at 09:32 AM.

 
Old 01-10-2012, 03:53 PM   #11
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,155
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Sleeping to get away...

Every facility should have a program for appropriate stimulation. It is as important so the physical care the residents get. Yes, they are in there even if they can't communicate. The trick is to watch their reactions and know when and what to do next. It's not an all or nothing but a very individualized situation depending on the resident. Timing is critical and appropriate level is critical. They will let you know when to back off and when to proceed. Facial expressions, agitation, and smiles are communication

Yes, the care givers are supposed to do appropriate stimulation along with physical care. They have a greater opportunity than we do. I do physical care for Mom when I can because that gives me an opportunity to observe and be sure everything is ok. I do like to check her urine for signs of dehydration which has been a problem and spot any bruises. It also gives the care managers more time with other residents who don't have families present on a regular basis. I also work with the Life Enrichment Manager who's job it is to give individual stimulation to residents on a daily basis. It's not for everybody but I do enjoy the time I volunteer and give Mom a little special attention in the process

Timing visits is important as Suzy said. Mom deals better with afternoon visits because their heavy activities are in the morning. It's all about individualizing what is best for the patient at any moments in time... because yes there are in there and they need activities. Just know that dipping the head and shutting the eyes IS communication

Love, deb

 
Old 01-11-2012, 12:48 PM   #12
Registered User
(female)
 
Join Date: Dec 2011
Location: Bedminster, NJ
Posts: 142
Suzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB User
Re: Sleeping to get away...

This reminds me of something my aunt does, when there is a visitor or situation she does not want to deal with, she puts on a stroke act - yes, she feigns drooling paralysis, drops her jaw open, and rolls her eyes and moans inarticulately.

This of course works like a charm and she is rid of said visitor or situation right away.

In that sense, the person with dementia or Alzheimer's can sometimes be very shrewd. They might not be able to figure out how to just say thanks for coming, but I am not having a good day, maybe some other time, good bye. So they devise a different approach, like my aunt has done!

Maybe for your FIL the sleeping is a similar thing!


Quote:
Originally Posted by ninamarc View Post
Suzi,

The home also has its own program to "push him" , if I put it your way.
The computer stuff is offered by the home and its affiliation. I cannot stop the girl from trying to ask him to look into the computer. He indeed responded to her talk because he likes her as a girl.

It is the home that tries to make him walk in the early mornings and put him in the wheelchair at lunch.
It is my husband who has a little hard time to understand.

I myself don't bother to wake him up. It just annoys me although I understand. We don't exactly have a wonderful relationship. My FIL is a selfish professor who put his own interests above his kids and family.

However, in terms of human right, I understand we do need to respect his situation. But like I said, if he does not like it, we leave.

We always leave when he has enough. He is happy to see his son.

You see, the thing is you assume he has nothing inside. How do we know? If he does not like it, we just leave him alone.

Do you understand what I am saying? maybe I should stop posting about this issue as people misunderstand me. My FIL is not a regular elder - he is too intelligent to be totally off. So he is not 100% off yet.

Nina

 
Old 01-11-2012, 02:18 PM   #13
Member
(female)
 
Join Date: Jan 2012
Location: Sanford
Posts: 87
Keysey HB UserKeysey HB UserKeysey HB User
Re: Sleeping to get away...

Nina,
My heart is breaking for you. Please take care of yourself and know that you are doing what is best. I wish I had some insight to offer but I don't have a lot of experience with this disease in its later stages. Heck, my experience with beginning is pretty limited. I will pray for you and your family.
Love, Lee
__________________
When you let go of a hurt, YOU are the one set free! - Rick Warren

 
Old 01-11-2012, 03:47 PM   #14
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Sleeping to get away...

No, my FIL had no problem with the visiting. It was not the issue of visiting. We only visited after a month for just one afternoon. We are 2 hours drive away so it is hard to get there in early morning to see his "actions".
No, he was not against us the visitors. He was like that with little things - sometimes he is happy and open his eyes and smiles and said stuff. Sometimes he closes his eyes to "tell us" that drop this, he does not like it.
So we can easily drop the stuff he does not like instantly and change the stuff. He likes the cookies in the home and etc. He likes the stroll we gave him in his wheelchair.

It is not about the visiting.

However I kind of want to ask the directors that maybe it is time for him to go for westwind wing - the wing where he needs more personal help. He needs 2 people to get him up from the bed anyway.
I want to ask them not to make him use the walker in the morning. It is their "idea" or policy that he should walk as much as possible to avoid the atrophy in the wheelchair.

I just wrote to the lady from the computer inc. and tell her to drop the photos stuff if he does not know them at all - go for the music that he likes.

The thing is my FIL has just started this gesture so we need to get used to it. I kind of know he will decline but never thought about this. It is communication so I told the director it was not sleeping but it was a message telling you "drop it, I don't like it... I don't get it... I don't understand..."

Hugs,
Nina

Last edited by ninamarc; 01-11-2012 at 03:51 PM.

 
The following user gives a hug of support to ninamarc:
Keysey (01-11-2012)
Old 01-11-2012, 06:07 PM   #15
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,155
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Sleeping to get away...

I don't have a problem with staff the encourages mobility as long as possible. They to not need to "force" him if he rebels but assisting is not a bad thing. It is very true, what they don't use they lose. Dementia patients will be chair bound soon enough. I say this because I have seen the opposite problem. With a few falls many are sat down in a chair and encouraged not to walk. This does advance the atrophy. Yep, it's a fine line they tread but I have always been in favor of keeping what they have in tact.

Nina, you are the one that is there and you can figure out what he is trying to say with his actions. Remember that you are only seeing a snap shot of one short time in his month. I'm impressed with the emotional and mental stimulation they are providing That is actually rather rare....

Love, deb

 
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Aricept
Aspirin
Ativan
Morphine
Namenda
  Reminyl
Risperdal Seroquel
Xanax
Zoloft




TOP THANKED CONTRIBUTORS



Gabriel (760), ninamarc (157), Martha H (124), meg1230 (93), angel_bear (68), jagsmu (55), Beginning (51), TC08 (44), ibake&pray (43), debbie g (37)

Site Wide Totals

teteri66 (1180), MSJayhawk (1011), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (761), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 02:15 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!