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Originally posted by: b kelley
Another dumb question--Where did my partener of 44 years go and how do I learn who this new person is? I miss the smiles and happy times with him and the grandkids.I guess this is just me feeling sorry for myself and not what this chat room is for.Forgive me I am stilll trying to come to terms with all the changes.
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Originally posted by: Snorky
B kelly, Your life sounds just like mine. We have been married 51 years and he is 77 and me 71. He does nothing all day but sit and maybe watch TV if I turn it on for him. Maybe I can get him to work on a 100 piece puzzle, but most of the time he sleeps. He has been taking a pill at night to help keep him asleep which has helped. It's mirtazapine 15mg generic for remeron, Otherwise he was waking at 3 and 4 and would be up for the rest of the night. For awhile he was shadowing me everywhere I went but that has slowed down and I can be away from him. I have learned that our entire life circles around him and will forever now. Then the other sad thing is he isn't remembering our life over the years when we look at pictures, so bit by bit I'm losing him. So many others on this forum have already lost their loved ones as far as being able to remember what they had. I think that is one of the hardest things to accept is your whole life is a blank for him. I love him and yet he doesn't want any touching from me for some reason. Bothers him. I'm doing better at accepting what this disease means and this forum and reading has helped. Just know that any feelings you have are not wrong, they're normal.
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Originally posted by: Mimi S.
Good advice, B. Kelley. Can you find 15 minutes a day, just for you?
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Originally posted by: b kelley
I can probably find the time to do something for myself,but when I do I wind up feeling guilty for not devoting all my time to my husband.He does not like for me to read or even be on the computer,that is why I am usually on here so late. It is usually very hard at bedtime,he thinks he is ready for bed but then it may be hours before he is asleep.Then during the day I can hardly keep him awake.Is this a pattern with others?
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Originally posted by: cloudspn
quote: Originally posted by ipoe:
I was putting a new trash bag in the waste basket today and i handed him the bag andsaid, would you please put this new bag in the wastebasket? and so he did..just threw it in like it was a piece of trash..Kinda funny..i guess i just didnt explain it well enough..
This type of thing is always happening with us lately. It's a good description of what it's like to live and work with a spouse with ALS.
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Originally posted by: Snorky
quote: Originally posted by ipoe:
Snorky, Our Doctor also prescribed Mirtazapine for DH and it worked just the opposite on him. He was awake all night and then ran off the next morning..Had to call his Son to come. by that time tho, i had picked him up in the car and his mood had changed and he was glad to see me. by the time his Son arrived, DH was almost his old self..that was the second time he ran off when taking this med. Now i am afraid to
give him anything like that..He does sleep well at night almost every night..but he gets sorry for himself in the daytime..says he's no good and nobody likes him or talks to him..I try to reassure him, but seems like i can't..
Boy, these meds sure do act different on different people don't they?!! So what works for one sure may not work for another. I just figured it was this med that was helping him stay asleep. We have a rule that he isn't suppose to get up until he hears the radio come on which is at 7 a.m. So far that has helped too. I know he may not abide by that forever. 
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Originally posted by: ipoe
quote: Originally posted by SherylS: quote: I can't get DH to want to do anything either and his newest thing is urinating between the toilet and the tub on the floor.
Mine was urinating down his leg between the birdseed section and the concrete yard art..... We were at Lowe's Hardware last night! 
My DH went to the bathroom yesterday and urinated in the bath tub and also had a puddle on the floor by the tub..when i showed him, he said he didn't do it..then changed his tune and said he didnt know why he did it..then said he didn't know anything or how to anaything..
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Originally posted by: ipoe
Snorky, Our Doctor also prescribed Mirtazapine for DH and it worked just the opposite on him. He was awake all night and then ran off the next morning..Had to call his Son to come. by that time tho, i had picked him up in the car and his mood had changed and he was glad to see me. by the time his Son arrived, DH was almost his old self..that was the second time he ran off when taking this med. Now i am afraid to give him anything like that..He does sleep well at night almost every night..but he gets sorry for himself in the daytime..says he's no good and nobody likes him or talks to him..I try to reassure him, but seems like i can't..
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Originally posted by: SherylS
I've not been able to get connected to this site for 2 days. Finally pushed the reset button on my modem. I feel so 'techie' now!
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Originally posted by: SherylS
Are we allowed to post pictures on these boards?
I have a great one of DH yesterday at the Museum of Flight in Seattle.
http://imagehost.vendio.com/a/...htDavidAirforce1.jpg
The bulge in the pocket of his coat is an extra pair of Depends. LOL
This was taken in one of the old display planes so there was a sheet of plastic blocking off the cockpit area. People get to sit in Business Class section and watch an infomercial about something related to that part of flying.
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Originally posted by: Mimi S.
Sheryl,You figured out how to do it.
Your DH looks fabulous. And only you could detect that bulge and then know what it was.
He certainly looks like he is having a great time.
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Originally posted by: SherylS
Yes, he was and we got some great pictures of him, all smiling!
That's the public face everybody else see's and say "why he looks all right to me!"
This is the face the caregiver sees:
http://imagehost.vendio.com/a/...f_FlightDBStired.jpg
With his ice cream sandwich in the snack bar. I didn't send this pix with the rest to the relatives....
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Originally posted by: meeko11
Sheryl-what a wonderful picture.
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Originally posted by: Mimi S.
Glad you're back with us Sheryl
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Originally posted by: SherylS
I see more and more of the photos taken of him, seem to have his eyes only half open. Is that part of the ride down the Alz Hwy?
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Originally posted by: Mimi S.
That's the way!
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Originally posted by: Mimi S.
Eyes look OK in the ones you posted!
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Originally posted by: SherylS
quote: Hi Sheryl, he just looks like he's thinking. It's OK.And I repeat, it was so wonderful that he went and had a good time.
I made sure that my son knew to TAKE him to the bathroom at least half way through the day otherwise if they asked him if he needed to, he'd just say "no".
Son said he just walked toward the bathroom and said "Dad, let's stop in here". No problems, no accidents.
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Originally posted by: Mimi S.
Hi Sheryl, he just looks like he's thinking. It's OK.And I repeat, it was so wonderful that he went and had a good time.
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Originally posted by: Cathy J. M.
quote: Originally posted by SherylS: Are we allowed to post pictures on these boards? I have a great one of DH yesterday at the Museum of Flight in Seattle. http://imagehost.vendio.com/a/...htDavidAirforce1.jpgThe bulge in the pocket of his coat is an extra pair of Depends. LOL This was taken in one of the old display planes so there was a sheet of plastic blocking off the cockpit area. People get to sit in Business Class section and watch an infomercial about something related to that part of flying.
Sheryl, what a handsome guy! And it's wonderful that he had such a good day.
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Originally posted by: Cathy J. M.
quote: Originally posted by b kelley:
I can probably find the time to do something for myself,but when I do I wind up feeling guilty for not devoting all my time to my husband.He does not like for me to read or even be on the computer,that is why I am usually on here so late.
I can't count on time not paying attention to my partner (who's probably stage 5) when she's awake. Most of us find it essential to have a caregiver come in to spell us for at least part of the day.
It sounds as if money is tight. I'm not sure what WV offers when it comes to in-home caregiving for people with low income and assets (aside from house and car). But certainly, check with your state's agency for aging to find out what resources are available.
Welcome to WVSeniorServices.gov
Also, many areas have income-scaled programs available for people with memory impairments. Your church or temple may also offer volunteer help.
You have to ask for help! That's one of the keys to acceptance and patience -- not doing it all alone, by yourself.
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Originally posted by: Dorinne
Sheryl,
Great picture, you are right, they look so great you would never know they have this disease. Same with my hubby.
We could have posted our pictures here if I knew how, or opened a new thread if they allowed
"photos".
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Originally posted by: Cathy J. M.
quote: Originally posted by b kelley:
So nice to know I am not alone or a bad person for feeling angry at times.
Certainly you're not a bad person for feeling angry at times. It doesn't help, though, to stay angry. Use it as fuel for thought and action. Figure out what you need to accept and to do in order to be happy.
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Originally posted by: b kelley
Snorky-It does seem like our lives are very much the same. My husband is 63 and I am 60 so we may be starting down a very LONG road.How long has your husband had this?
Mine I guess is in the early stages,but that means I never know what to what to expect,one day he may be fairly normal(only very tired and doing nothing)Then the next day or even hour he may be talking of things that make no sense. I miss being able to go to the store in piece, I can not leave him alone at all.Can you? Our daughters say get some help but we are not ready for that. Guess this is our life and we have to live it as best we can. Best to you all.
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Originally posted by: summertime
First let me say, I understand where you are coming from. My husband was diagnosed in Sept of 2008 but I noticed sympotoms longer. One of the first symptoms I noticed was that he lost interest in doing things that he used to do. Nothing I suggested helped. I stopped pressuring him and just let it go. Now he sleeps most of the day and when he does do something it seems to exhaust him. I have a caregiver coming in on Wed and she takes him out for 3 hours. He seems to enjoy that and gives me a break. This was a god send since he is not driving anymore. My prayers are with you. It must be difficult raising younger children.
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Originally posted by: SherylS
b. kelley:
My DH is about end of stage 4. Still social, if convoluted and still mobile, but not driving any more. The first thing I did, on the recommendation of others here, was to get him into an Adult Day Care Center. I can see that he's fed and safe and clean, but I wasn't up to entertaining him too! We're told that they need to have their brain stimulated. That's what ADC does!
He goes T and Th, with a shuttle bus as transportation, included in the cost. That gives me most of 2 days for ME.
When he's at home, under the explanation of exercising his brain, I set him up under a bright light with a 100 - 300 pc puzzle. He also plays Solitaire.
We can't do it all. We need help. That's what ADC does for DH.
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Originally posted by: Snorky
[QUOTE]Originally posted by b kelley:
. I miss being able to go to the store in piece, I can not leave him alone at all.Can you? Our daughters say get some help but we are not ready for that. Guess this is our life and we have to live it as best we can. Best to you all.[/QUOTE
]
I can still leave my DH for a couple hours but it is getting a little more worrisome to what he might do at home. He doesn't wander yet. The worst thing about it is he does nothing and is crabby most all the time. So no one to really talk with about anything.
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Originally posted by: b kelley
Does he like to go to ADC? I am not sure mine is ready for this,he is not too social,and does not like to do anything that I am not right by his side.I would like so "me" time but feel bad about taking it.
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Originally posted by: b kelley
Snorky, This is hard to find and keep track of whom you are talking to or answering,is there an easier way or do I just keep looking at all posts and try to figure who is responding to me.
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Originally posted by: Mimi S.
Hi B. Kelley,
Personally, I always hated worksheets both as a teacher and parent. When I was a teacher, I had work stations set up so children could rotate. Find some Legos or other building things. Check out garage sales. Match Box cars, several different ones. There is a very soft clay: CROYLA, more pliable than play do. Soft chalk and paper.
Balance scale. Put something on one side. Challenge him to make it balance.
Have them near him. You can, if he ignores them, begin doodling with them as you sit and talk with him.
Books on tape. He probably can't follow adult books. Look for Newberry Award winners that he might be interested in and try those. Look in the children's section of the library.
Can you find magazines with lots of pictures in a field he might be interested in.
Does he like to watch birds? A children's book on birds?
Call your local Alz. Assoc. (Chapters at bottom of page) and ask if there are any Memories in the Making group anyplace in the area.
Does he like music? Some old sing alongs. An old drum, bells, an old pot and wooden spoon, etc.
Think what kids like to do?
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Originally posted by: SherylS
Have you read about the different stages? It helped me to know what to expect at the various stages.
http://www.alzinfo.org/clinical-stages-of-alzheimers
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Originally posted by: b kelley
SherylS I have tried puzzles-he cannot stay concentrate on that.I have been giving him work sheets from second and third grade school books.Some days he can do them others he canot.He too can not drive anymore.We live in avery rural area,so we do not have close neighbors to come in much.It does not help that we have had cold and snowy weather,so he can not even get outside much.
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Originally posted by: SherylS
Yes, he likes it. Find one in your area and call for a tour. If he's eligible for VA benefits, they said the VA pays great for this facility.
He might respond better to the puzzles if he needs you there, but you need ME time or you will break and need outside help sooner than you may be ready for it.
Do you have a friend or neighbor who might play checkers, or card games with him or take a walk with him?
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Originally posted by: SherylS
My hubby loves the Oldies music on Comcast Radio (channel 924 on TV). He played that all day yesterday while he worked on a puzzle. It was a nice change from the CMT country videos he usually wants running.
I just keep telling him its good for his brain exercising to do those puzzles! LOL
Today he's back to the Adult Day Care and I'm off to help a SIL figure out how to use her computer. Funny thing, I never cared to spend much time with her before, but compared to AD,spending time with her is looking pretty good right now!
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Originally posted by: Mimi S.
Hi again, B. Kelley,
As you can see, I usually begin my posts by addressing a particular person. These are easy to find. Not all posters do and it can be confusing as to whom the are addressing te remark. They think they are responding to the previous post, but meanwhile someone posted an answer to a previous post.
When ou start a new topic, it's a good idea to begin a new thread by going to 'Start a new discussion or poll'. Pt the topic in the small top space and then whatever you have to say in the larger box below. The first several answers are apt to be on topic. Then someone slightly brings up a new idea and the thread begins to get muddied.
Just stay with us.
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