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My first post(2)
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Annetta

Oh, Marion - I know EXACTLY where you are. Mine is in the VA hospital - and wants to go home, go home, go home. I thought he really wanted to go home until he was describing it to me - and it was his childhood home. He knows that what's in his mind is his childhood home - but, can't conjure up ANY information about OUR home. He is so confused - every time I go there he wants to know how I found him - how did I know where he was??? Same questions over and over and over and can't remember anything for 2 seconds.

Are you considering placement or in-home help? Sounds like you definitely need a break. We are human, you know - and this is a herculean task!

You'll get awesome advice and encouragement here. Come back often!
Internal Administrator
Posted: Tuesday, January 17, 2012 5:18 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: Marion E

this is my first post. My husband is 71 and has AD. The AD is progressing rapidly now. He has been taking Namenda and Excelon since 2006 when the diagnosis was made. Just last week he started to get angry with me. I cannot convince him that he is home and he becomes upset when I won't take him "home". I have gone as far as driving a few towns away and coming back home. That settles him for a short time. He still knows our address but does not believe that our house is his home. This begins from early morning and is causing me so much stress and is exhausting me. Also, he is convinced that there are other people in the house. Not actually seeing them but saying "where did the people go ?". He mentions his Mother a lot and wants to visit her so I have to tell him that she passed away. I just wonder how much more I can take without breaking.

I have help from family; but, as you all know the day to day of this disease is so hard on us. I feel alone, afraid and frustrated.

I have been reading posts for months and all of you have helped me through other rough patches. I knew now was the time I had to write.

Thanks you for listening.

Marion
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Starling

quote:
Originally posted by Ellen Lee:
HOME IS A CHILDHOOD MEMORY AS I AM THE MOTHER HE NEVER GOT ALONG WITH BUT PLEASE KEEP HIM WITH YOU AS LONG AS POSSIBLE I SO DO NOT AGREE WITH PUTING THEM IN A HOME SORRY STEP UP YOU DID NOT SIGN UP FOR THIS BUT IT IS LIFE


I have to disagree with this. No it is not life. No keeping them at home sometimes is not a good idea. I fought placing my husband until we were in crisis and someone else made the decision for me, so I know where you are coming from. But my husband is so much better off where he is. And he is safe, and I am safe, because he is placed.

The "going home" thing, when it gets bad enough can be a trigger for placement. I got shoved away from the door after a 2 hour fight. He tried to go out a window just before that. There was no way I could stop him although I truly did try.

Most of all, he was placed so I could survive this disease. So I have to disagree with your advice because it is very bad advice.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Ellen Lee

HOME IS A CHILDHOOD MEMORY AS I AM THE MOTHER HE NEVER GOT ALONG WITH BUT PLEASE KEEP HIM WITH YOU AS LONG AS POSSIBLE I SO DO NOT AGREE WITH PUTING THEM IN A HOME SORRY STEP UP YOU DID NOT SIGN UP FOR THIS BUT IT IS LIFE
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: jfkoc

We have had some very interesting discussions on "going home" and where that is in our loved ones minds. See if you can retrieve some of them.

You are doing a good job...it just such a difficult task!

Have you had a chance to intestigate Naomi Feil?
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Marion E

Thank you so much for your reply.

I plan to have in home help. I signed with an agency. Up until last week I did not think I needed the help but now I know I do. I called the doctor this morning and was able to get an appt today.

I think what really is a sad is that he cannot relax. Even when sitting he is constantly moving things on the table beside him or packing a bag to "take home".

Marion
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Dottie LSP

quote:
Originally posted by Marion E:
Thank you so much for your reply.

I plan to have in home help. I signed with an agency. Up until last week I did not think I needed the help but now I know I do. I called the doctor this morning and was able to get an appt today.

I do not know where you are, but ask the MD to admit him now. and where the best place to hospitalize your husband might be. The specialist (neurologist consult MD will get him on the proper medication so he will be less agitated. An agency person will then be available should the doc say you can manage him at home. Otherwise the doc may say, your husband must MUST be in a secure environment. You have gone way beyond what anyone would expect and by home, he means, "comfortable"
He has no clue where home is nor would we when we get that ill.
Bless you and email me at dlpeagler@gmail.com if you wish. I live in Tennessee but would be happy to research the medical community in your area for you since you are so very very busy.

"I have been to the bottom and it is solid".
Dottie P

I think what really is a sad is that he cannot relax. Even when sitting he is constantly moving things on the table beside him or packing a bag to "take home".

Marion

Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Rkg

Marion, Welcome! Glad you decided to join us. As you can see this issue is common.

First you need to make sure it isn't a health issue such as UTI, or side effects bringing on this new issue. It's a tough one to deal with, but suggestions of previous discussions on this topic, range from telling him you will take him home next week, next month etc. That will calm him for the time being. Tell him your waiting for your vacation and then you will take him. FIB'S are often needed along this journey. Nothing wrong with them. Are you going to have to repeat the fib, most likely! But what you learn to do is calm them for that moment in time.


My Dh was having this issue recently (kinda still is at times) but it was all brought on from side effects, so I really suggest making sure something isn't causing this new behavior such as a UTI.

My FIL started the "go home" thing which it was finally determined he had a UTI. Any time his behavior changed like that it was due to some other type of issue such as a UTI, Oral issue, etc. Once the meds started taking care of the UTI, his behavior went back to mellow Bob.


Good luck! Hang in there, your not alone.......
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: JAB

Marion, hi, welcome to the forum. It may help you to figure out what's going on in his mind, and how to respond to him, if you read, e.g.:

Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience":
http://alzheimers.boomja.com/A...xperience-59731.html

Jolene Brackey's book, "Creating Moments of Joy":
http://www.enhancedmoments.com/
Click on "Products" and scroll down.

The Savvy Caregiver training program from:
http://www.caresprogram.com
I think you can get a 20% discount with code AADVD20.

I thought this article on agitation was pretty good, too:
http://alzheimers.boomja.com/A...gitation-268557.html
...at least, it's good once you wade past the generalized handwaving stuff at the beginning, and get to the part on agitation.

Also:
http://www.ec-online.net/Knowl...ticles/agitation.htm
http://alzheimers.boomja.com/A...undowning-31322.html
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: ipoe

Hello, Marion E. wheni started reading your post i checked again to make sure it wasn't me writing it..That is exactlywhat i go through almost every day..We also have driven to diff places and nothing is "home". Not even his childhood home..When we get out, he will say, i don't know, go whereever you want to. and i say, ididn't want to go in the first place. Most times i can put him off. but sometimes he is insistent. Telling him tomorrow or next week, we will go doesn't work withhim..he says whats the matter with right now?..frustrating isn't it? I visited the AD ward just last week in our NH nearby and i couldn't wait to get out of there. Poor old people with nothing to do or look forward to..At this time, i simply could not place DH. It is also too darn expensive..
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Cathy J. M.

My partner went through a "this isn't home, I can't sleep here" phase when I first brought her back from the geripsych unit. She was extremely disoriented, apparently from the seroquel. I was able to convince her to sleep with me in our home, but she didn't believe it was really our home, thought it must be a motel. Luckily this phase lasted only a few days.

Every morning we'd lie in bed and I'd reorient her as to who I was, where we were, what she had done in her life, what she did now, etc. We still spend quite a bit of time in bed every morning talking and cuddling, but at that time it was a shock to me and the "extra time delay" was a problem. Now I'm used to it.

I hope this phase for your husband will pass fairly quickly. Can you get him involved in activities that he really enjoys and finds satisfying? I think that's a key to being content in a place -- that, and of course lots of loving attention as I'm sure you already provide.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Starling

I'm absolutely seconding the medical assessment suggestion. Make sure that you LO is checked out for UTI, and also for other things that could have caused a cognitive change.

They did that with my husband when he was in the hospital. He was there for the medical assessment, not for placement. In his case the results said it was just the disease getting worse, but they DID CHECK HIM OUT FIRST.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Dorinne

Marion and Ipoe,

My husband has just started thinking sometimes we are not home, or where are the other people, or when are they coming, mostly when he is tired.

May I ask what stage do you think your spouse is in if you don't mind? Mine is probably in stage 5 going into stage 6.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Dorinne

Lurk and Ipoe,

One way to find the stages is:

cl at top of this page on the alz assoc. on the right.

There main pg will come up, cl alz disease, where it shows different topics, read the drop down menu until you see "stages" and cl that it shows stages and read down the page.

Maybe you already know this but this is one way.
I hope that will help. There is another site but can't think of it now.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: ipoe

Dorinne, My Husband is prob in a 5 maybe..i don't really know.. a little questionairre i answered on Caring.com said he was in early severe, whatever that is. I think they seem to go in and out of different stages..one day it will seem like one and then maybe the next day it won't be so bad..It is confusing. Just take each day as it comes and deal with it..that is all i know..
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: ipoe

quote:
Originally posted by KittyHawk:
Hi Marion,
I have never posted anything on this board, although I have read others thoughts every day. You really hit home to me, since I am living with my 72 year old husband with 6 years into this horrible disease. He no longer knows where he is - only wants to go home. Asks where his Mom and Dad are all day long and doesn't know any family members or myself at times. Knows he needs me, but no longer thinks I am his wife (of 45 years). We have had such a wonderful life with great memories - unfortunately, those memories are only mine now. Thank you for your input - good to know others are feeling our pain.


KittyHawk,'My husband just turned 81 and is in good physical health but he is constantly asking me about his Mom and Dad. He remembers his siblings and can name them in birth order but you ask about his children and he can't name them,,when he sees them, he knows them as someone he knows but he can't call their names except occasionally.He is constantly asking me what my name is and when i say what do you think it is he will say my name..he just wants to be sure, he says..We have been married 32+ years.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: KittyHawk

Hi Marion,
I have never posted anything on this board, although I have read others thoughts every day. You really hit home to me, since I am living with my 72 year old husband with 6 years into this horrible disease. He no longer knows where he is - only wants to go home. Asks where his Mom and Dad are all day long and doesn't know any family members or myself at times. Knows he needs me, but no longer thinks I am his wife (of 45 years). We have had such a wonderful life with great memories - unfortunately, those memories are only mine now. Thank you for your input - good to know others are feeling our pain.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: lurk

Ipoe, this is interesting. My husband is probably a year behind yours, but he is always naming his brothers and sisters in birth order. I'm thinking that since they lose the later years first, your husband (and others) are back in their growing up or young adult years somewhere. You should question, question, question to see what's going on in their minds--and at the same time you would be giving them validation.

I have the "stages" information that JAB indicated bookmarked, but I can't reference it as I don't know how. But it's on the threads over and over.

(JAB, should I just write that down from somewhere that you have referenced it, and then type it in character by character?)
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: lurk

So that's how you do it, JAB. Thanks. And now, what does PITA mean? I researched the abbreviations information that you furnished on another thread, but didn't find it. Doesn't have anything to do with bread, does it?

Thanks for always knowing all the answers.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Dee K.

I too, know what you are going through. My dh is constantly asking me where everyone went--when there is no one here but the two of us. He also forgets that we are married--thinks he is just here visiting me and his wife droped him off here. He thinks he is married to his first wife who died over 30 years ago. We have been married for 37 years! Still can't get him to shower. I took some of the suggestions from the message board and tried to get him to shower with me. But he thought I was nuts to suggest that we get naked together in the shower because he is a married man! Don't know who he thinks I am!
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: lurk

quote:
Originally posted by Dorinne:
Lurk and Ipoe,

One way to find the stages is:

cl at top of this page on the alz assoc. on the right.

There main pg will come up, cl alz disease, where it shows different topics, read the drop down menu until you see "stages" and cl that it shows stages and read down the page.

Maybe you already know this but this is one way.
I hope that will help. There is another site but can't think of it now.


Thanks; I knew that. I never tried it, so I forgot. I like this list. It's different than the one JAB referenced, but I like both of them.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: JAB

quote:
Originally posted by lurk:
I have the "stages" information that JAB indicated bookmarked, but I can't reference it as I don't know how. But it's on the threads over and over.

Seven stages is here:
http://alzheimers.boomja.com/S...zheimer-s-26575.html
When you click on the link, lurk, and open the page, way at the top of your browser you'll see a box that contains the URL (the internet address). Unless it's a secure site (e.g., your bank), the URL always starts with: http://

When you've found that, highlight the URL and copy it. Then you can paste it into your post.

(You can't do a copy-and-paste from this post, because the software abbreviates the URL so that not all of it shows. PITA. Wink I keep a word processing document with a list of the URLs that I reference most often, so I can do a simple copy-and-paste from that.)
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Teresita36

Marion, you have described my DH, who passed in October after 10+ years of dealing with this horrible disease. During all those years he was on Namenda and Excelon but Lexapro was added 5 years ago to help him stay calm. It helped for the most part but there were days when nothing would calm him. For the past four years he kept begging me to take him home and, after questioning him, I realized he was not referring to any of the four homes we had lived in during our 48 year marriage. Home was his childhood home. Since I don't drive, I would always tell him my daughter would take him home in a couple of weeks and that would satisfy him.

He constantly asked for his sister (who lives 2 hours away) and his mother and older brother, both of whom had passed years earlier, and I would say she was visiting family in Utah (far from Florida) and she was coming in two weeks. As for his brother, I would say he had called while DH was sleeping and had said hello. I have to say, it was not easy going through the same thing every day but I knew he couldn't help it and I felt sad for him.

From day one I was determined to keep him at home until the end and God gave me the strength to do it. The last six months I had help from Hospice, who were absolutely great, as well as an aide whom I hired several days a week to drive me places or stay with him while I ran errands. It was a perfect arrangement and I'm so glad I had him at home until the end. Whatever you do, I wish you the best and please don't feel guilty about placing him if you have to. I did get to visit a couple of nursing homes and most of the patients seemed content.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: JAB

Ah ... no. Pain in the ...
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: meeko11

PITA=a term of endearment used to describe one Big Grin
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Dorinne

I was wondering what it meant also. ha ha Big Grin
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Dottie LSP

quote:
Originally posted by JAB:

Ah ... no. Pain in the ...


You are so good!!! Thanks. Dottie
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Snorky

That's a good one! I'll keep that one in my new abbrev. when I'm talking on the phone.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Marion E

Thanks to all who responded. It really helps to know someone else is going through exactly what I am going through.

He is in stage five moving into stage 6.

Took my DH to the doctor's (geriatrian). The Neuro had put him one Wellbutrion which the geri said could cause agitation. Per the doctor, I weaned him off the wellbutrion. I did not see a difference. Doctor suggested to have him take low dose clonazepam twice a day.I had been giving him that when having a bad day but not on a regular basis. Started the twice a day. I only see that he is more tired now but still unsettled most of the time. It is so frustrating.


I called the agency and scheduled every Wednesday for 4 hours. Will probably need more help soon.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: JAB

Meeko11 means it's a term of endearment used to describe her. Big Grin
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Ttom

Marion E,

Has there been any changes? Please wrote back!
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Marion E

There is no difference with the Clonazepam. He is still agitated most of the time. He cannot sit still and just watch TV. He is constantly moving things around and packing some things in containers to take "home".

It is very upsetting for me since I cannot help him.

We have a scheduled appt the the neuro next week.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: lurk

Thank you, EVERYONE. JAB, thanks; I tried and tried to come up with something. But, JAB, for once I disagree with you--about Meeko, that is. Sweet, sweet lady! Smiler
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: gloraya

Hi there. I am caring for my 72 YO husband who is end stage. We relocated last March 1 and he was doing pretty well. Then colon cancer struck again and we did radiation for 5 treatments to try to eliminate the pain. Well, the pain went away, along with the cancer, and I think a lot of the brain as well. He has no clue who I am and can do nothing for himself. I had to put him in a nursing home last year for two weeks while I had surgery and I will never, ever do that again. It was horrible. If I were not there to care for him he would probably be dead. I am caring for him at home. I gave up my career (I'm only mid 50s) to stay home and care for him. I have had him in adult daycare for the last three years. He did pretty well until recently. I just took him out two weeks ago and am doing it alone at home. I have assistance for 4 hours a day while I run around or just have them to talk to. As mentioned earlier, we just moved last year and I have had no time to go out and meet new friends. I guess you all will be my friends. I am feeling very alone and need someone to talk to since I don't get out to group meetings. My house is always messy and I'm always tired and haggard looking but my priority now is not me or my house -- it is him. I am doing all I can do to make his last days on this earth good ones so that when I go to bed I can rest knowing I have done all I can do for him. I hope I am doing the best thing. Thank you all for listening to me babble. Take care and I look forward to becoming friends with you all. Marion, you are doing a great job. Please don't quit or give up. Keep up the great work!
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Mark ORDCG

quote:
Originally posted by Marion E:
this is my first post. My husband is 71 and has AD. The AD is progressing rapidly now. He has been taking Namenda and Excelon since 2006 when the diagnosis was made. Just last week he started to get angry with me. I cannot convince him that he is home and he becomes upset when I won't take him "home". I have gone as far as driving a few towns away and coming back home. That settles him for a short time. He still knows our address but does not believe that our house is his home. This begins from early morning and is causing me so much stress and is exhausting me. Also, he is convinced that there are other people in the house. Not actually seeing them but saying "where did the people go ?". He mentions his Mother a lot and wants to visit her so I have to tell him that she passed away. I just wonder how much more I can take without breaking.

I have help from family; but, as you all know the day to day of this disease is so hard on us. I feel alone, afraid and frustrated.

I have been reading posts for months and all of you have helped me through other rough patches. I knew now was the time I had to write.

Thanks you for listening.

Marion


Marion,
My Mom went through very much the same scenario but worse she would sneak out of the house and run away; looking for her Mom (died in Poland) and her sisters, some of whom are here in the U.S. and one who's in Poland. Please continue to be patient. It sounds like you're doing a GREAT job but YES you're under a lot of stress. I used to think the day was 36 hours long when my Mom would keep repeating all of this from the time she woke up until bedtime. Perhaps a Adavan, Klonopin or one of the drugs that will just "take the edge off" would help him relax a bit and not be so highly wired. Mom is currently taking Adavan which makes her to be LESS ANXIOUS through the day but then again she's in a hospital bed at home, on Hospice and in the final stages of AD. The anti-anxiety meds do work and along continued care from you, could make life less horrible. Also remember, every action DOESN'T require a reaction from you. Sometimes less is more; not answering or just saying something to pacify the patient. Good luck and keep us informed as how you're both doing.