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Old 01-11-2009, 07:40 AM   #1
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Smile How do I go on?

My father in law lives with us and has for the past 3-4 yrs since his wife passed. He has been diagnosed with frontal lobe dementia. He is very charming when he is out with others. I am really his care giver. Hubby babys him and gives him he night time meals. We both work opposite shifts. I am on afternoons hubby works days. I take him to his dr appointments and such. I see everything basically fil does. I feel like I know him like a book. I got him on schedules of how to do things so he doesnt forget but it doesnt always work. lol FIL acts like a child at times. Hubby sees a bit. I get so frustrated at fil it bothers me. I just want to scream. Fil cannot live by himself but not bad enough to be in a nursing home. My sister in law (have 2 one lives in ariz and one 10 mins away) have taken him for dinner once in awhile. Fil has been very mean to both where they want nothing to do with him. She takes him just so we can have a break. I am so frustrated with him right now I cant even speak to him. Hubby says just ignore him. So hard to do cause I feel that is mean to him but that is the only way I can deal with him at this point. I wish he wasnt here. God that sound so mean. I feel like I am giving up our lives to take care of him so he can have a nicer life instead of a nursing home and here we are spending every moment taking care of him and he acts up. Does that make sense? God that sounds horrile. He wants to be center of attention. I guess Im writing this just to feel better. If I see it on paper or in front of me I will feel better and not take it out on him cause I know truely its not his fault but it is so hard to take. I have him going to a place 2-3 days a week where its like a romper room for adults. They sing and play games and do little exercises. It does him very good cause it keeps him busy. He really needs to go 5 days but only wants to go 3. Happy he does that. Gives me a little break during the day. So I just want to say thank you for having this site. New here. Maybe this will give me a little uplift.

Cheryl

 
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Old 01-11-2009, 09:12 AM   #2
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Re: How do I go on?

Happy-or should we say Not so?

Welcome to our spot. I'm sorry you had to find us, but I bet we can help put that smile back on your face or at least give you a chuckle or two. I'm sorry that your FIL is acting up, but it goes with the territory I'm sorry to say. Not too much that you can do about that.

BUT- have you thought about moving him into assisted living? He may not be bad enough for a full fledged nursing home, but an assisted living enviroment would be just the right step for him now. Also it would take the burden off of you and your hubby-and don't tell us it isn't a burden. We know what is involved with caring for someone with dementia. And you are giving up your life to care for him-it's a fact. If you can't bear the thought of AL-then do send hiim 5 days a week. It's not if he wants to go-you need the respite for heavens sake. Either that or have someone come in and watch him during the day for you. But I would push for assisted living or have the dear sister have him move in with her. Family loyalties extend to more than one evening every so often. He is her father also.

Your hubby needs to realize that dad needs to be somewhere where he will be watched by more eyes that just you and him. AL and NH are trained to see them and catch things that you don't see. They are also on shift work so that there is always someone fresh and alert there. 24/7 care. You get exhausted because you are doing it all alone 24 hours a day. People go home and rest, then come back....They stay pleasant because they have relief. Something to think about.

But, welcome to our group. Post away. I'm sure the gang will chime in and give you some good advice.....

 
Old 01-11-2009, 09:29 AM   #3
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Re: How do I go on?

Thank you so much. I read my post and gosh it sounds so selfish of me. I dont mean to sound like that. He is a very charming man but it get to me at times because I am a impatient person. I know its the disease. Its funny cause he knows he acts up cause he tells me but he doesnt know why. If I dont tell or I should say remind him to do things he wont. Just a shower. He will go all week or maybe months lol without taking one if I dont remind him. Im constantly reminding him to do things. He calls me sarge. He was in the army and he says I remind him of that. I feel myself I am sarge cause if I dont tell him to do something he will just sit and rock. I take care of my fil for my husband. His mother was in a nursing home for more than 10 yrs. with alz. She was only to live 1 year. She lived for like 12 years with alz. So we would like to keep him here for as long as we can. He really isnt that bad now just gets frustrating at times. It seems like we feed off each other, my fil and I. I know he depends on me for alot of things. I tend to at times resent him staying here. Man that sound horrible. I am glad I found this site. Maybe this will help me cope with things. You are right I might just send him to his daycare for 5 days. In the beginning he didnt even want to go but he does like it now. Man I had to fight with him just to wear depends. He goes its embarassing wearing depends. I said finally, whats more embarassing wearing depends where no one even notices you are wearing them or having someone seeing that you ****** your pants?? He finally got it. Now he wears them without me harping. That was finally a fight I won. lol I read somewhere here that they are aware of how you are feeling. I think my fil reflects on that. When I am upset with him he is more withdrawn. Comes out only when I tell him his meals are ready. I feel badly for that. He is missing out on so much. I would love for him to be more active. It seems like all he wants to do is sit and rock. He goes I dont know why I like to rock but I do. Ok Im rambling. So thank you so much for your response. I do feel so much better. At times I think is it me?

 
Old 01-11-2009, 10:08 AM   #4
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Re: How do I go on?

hi happy. you are not selfish or mean. fil needs to go 5 days a week. you dont realize how much stress is on you and you can make yourself sick. talk to your husband-he may be ready for a nursing home sooner than you think. its so hard to deal with. we just put my mom in a nursing home and i hate it so much because i feel guilty, but my father cant take care of her anymore. hang in there and start looking at homes just to get an idea.

 
Old 01-11-2009, 10:11 AM   #5
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Re: How do I go on?

Oh Cheryl...just know so many of us know exactly what you're feeling!

First off...I don't know how you're even coping with this to do both caretaking AND working! You'll have others, besides me, suggest permanent placement for your FIL...this disease progresses and it will get more difficult for you. If you had challenges with your MIL at a facility...maybe that's why no decision has been made.......but your life will change even more in the months ahead.

It sounds like he is following the familiar path most stumble down...and I agree it would surely help if you were able to get him to the daycare more...but do realize, there will come a time he will not be able to go there either.

No, my Michigan friend...it is NOT you! This horrendous disease takes over our loved ones' lives...and ours as well. Please come back often and share feelings, ask questions, or help others in this same situation.......Pam

 
Old 01-11-2009, 10:21 AM   #6
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Originally Posted by petal*pusher View Post
Oh Cheryl...just know so many of us know exactly what you're feeling!

First off...I don't know how you're even coping with this to do both caretaking AND working! You'll have others, besides me, suggest permanent placement for your FIL...this disease progresses and it will get more difficult for you. If you had challenges with your MIL at a facility...maybe that's why no decision has been made.......but your life will change even more in the months ahead.

It sounds like he is following the familiar path most stumble down...and I agree it would surely help if you were able to get him to the daycare more...but do realize, there will come a time he will not be able to go there either.

No, my Michigan friend...it is NOT you! This horrendous disease takes over our loved ones' lives...and ours as well. Please come back often and share feelings, ask questions, or help others in this same situation.......Pam
Thank you both for your replies. It has helped alot. I wish we put him in a assist. living right off the bat it would of been alot easier. Now its a bit harder to do cause of our feelings. It will be heartbreaking to do when we do. Im not making the decision. Im going to let my husband do it cause I never want him to say it was me. Now that I have found this wonderful site it will help me. My fil doesnt have alot of money due to him giving it to relatives. So I am going to look into having him go more days. He needs the out. He goes in spurts with his outbreaks. So we will see.

Ok here is a question for you. I was told he has frontal lobe dementia. Will he eventually get full blown alz?

Again thank you so much!
Cheryl

Last edited by Happy1240; 01-11-2009 at 11:07 AM.

 
Old 01-11-2009, 11:54 AM   #7
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Re: How do I go on?

There is no such thing as not being bad enough for a nursing home. Some of the patients where my Mom lived (happily) for 2.5 years before her death were so normal looking and acting that no one could see a difference. They were placed there upon the advice of their doctors and because they had no children or compliant daughters in law who gave up their own lives and free time to care for them.

So, first of, all, my advice is to look into a good nursing home for him. Don't let the cost scare you, we managed it and Mom had very little money. She was there for 3 months and then her care was paid for by Medicaid.

A NH is not some kind of scary place where people are drugged into semi consciousness, or allowed to scream all day and mistreat each other. Your family may be thinking of the NHs of the distant past. Nowadays they have all kinds of activities geared to the ability of the patients, good food, loving staff. People who are PAID to care for them on an 8 hour shift, not someone who takes care of them every waking moment and many nights too, for free. (I know. I did it for 5 years.)

Your relatives who are' mad at him' and thus ignore him, are getting off way too lightly. What if you suddenly get 'mad at him," Goodbye Papa? They have made it easy for themselves, knowing YOU will do it ...

You just tell your husband everything that goes on on your watch, so he doesn't think it is an easy matter. Let him take full care for one week - go and visit Arizona! See how he thnks about it then. Your FIL will be in a NH before you even return!

Good luck be strong, stand up for yourself and STAY Happy!

Love,

Martha

Last edited by Martha H; 01-11-2009 at 11:59 AM.

 
Old 01-11-2009, 12:15 PM   #8
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Re: How do I go on?

Happy.... Welcome to our little corner. First I want to say that we have all felt, said, and beat ourselves up for exactly what you express. It is part of this disease. It is so very frustrating, not only to the patient, but to all those that have to deal with it. There are days I have wanted to run away and hide.

We placed Mom (ALZ) and Dad (Vascular Dementia) in AL about 16 months ago. Wow... doesn't seem that long ago but it was. I will agree that it was the hardest thinhg we have ever done and I had so many conflicting emotions. Part of me felt like a failure because I couldn't make their existance outside of a facility work... but I got over that one really quick. I felt relief, not only because I knew they were now well cared for but also because I didn't have to do much of that caring myself. I was excited for them that they would get much more socialization, better food, and meds as prescribed, which they were not getting all the time at home. And then there was the pure sorry for having to break up our home of 54 years.

There was a long adjustment period. At time I did question the decisions. But, I know in my heart that it was the right decision for them. I know they are getting much better care there than they were getting from a frustrated stressed out daughter!!! My only regret... is that we didn't do it sooner. The later in the disease it gets, the harder it is for them to adjust. Mom and Dad missed so much sitting in the house.

As for the reatives... Unless you live with it every day, it is hard to understand how hard it is. They may not have the understanding of the disease as you do. Perhaps you need to kindly clue them in by inviting them to take him more often If AL or NH is not an immediate options... and you really do need to check them both out... then absolutely go 5 days a week to respit care.

As for your FIL agreeing to anything. He probably won't. You just have to do it. Don't tell him he is going 5 days a week. Just get him up and take him. The time frame deficiency is such that he probably won't realize the difference.

Again... Welcome. This is a great place to vent, compare experiences, realize we are not alone in our feelings, fine empathy and sympathy, and gain information. You have found the right place so drag up a chair, grab a tall drink, and stay a while

Love, deb

 
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Old 01-11-2009, 01:49 PM   #9
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Smile Re: How do I go on?

Quote:
Originally Posted by DGabriel10 View Post
Happy.... Welcome to our little corner. First I want to say that we have all felt, said, and beat ourselves up for exactly what you express. It is part of this disease. It is so very frustrating, not only to the patient, but to all those that have to deal with it. There are days I have wanted to run away and hide.

We placed Mom (ALZ) and Dad (Vascular Dementia) in AL about 16 months ago. Wow... doesn't seem that long ago but it was. I will agree that it was the hardest thinhg we have ever done and I had so many conflicting emotions. Part of me felt like a failure because I couldn't make their existance outside of a facility work... but I got over that one really quick. I felt relief, not only because I knew they were now well cared for but also because I didn't have to do much of that caring myself. I was excited for them that they would get much more socialization, better food, and meds as prescribed, which they were not getting all the time at home. And then there was the pure sorry for having to break up our home of 54 years.

There was a long adjustment period. At time I did question the decisions. But, I know in my heart that it was the right decision for them. I know they are getting much better care there than they were getting from a frustrated stressed out daughter!!! My only regret... is that we didn't do it sooner. The later in the disease it gets, the harder it is for them to adjust. Mom and Dad missed so much sitting in the house.

As for the reatives... Unless you live with it every day, it is hard to understand how hard it is. They may not have the understanding of the disease as you do. Perhaps you need to kindly clue them in by inviting them to take him more often If AL or NH is not an immediate options... and you really do need to check them both out... then absolutely go 5 days a week to respit care.

As for your FIL agreeing to anything. He probably won't. You just have to do it. Don't tell him he is going 5 days a week. Just get him up and take him. The time frame deficiency is such that he probably won't realize the difference.

Again... Welcome. This is a great place to vent, compare experiences, realize we are not alone in our feelings, fine empathy and sympathy, and gain information. You have found the right place so drag up a chair, grab a tall drink, and stay a while

Love, deb
You all are saying exactly how I feel! I am so very happy I came here. Thank you so much.

My fil goes to the daycare center (called older people commission) by the smart bus. They come and pick him up and take him. So I dont have to go out. Great huh? I am. They only take donations. What a fabulous business. I am able to be around my fil today thanks to you guys. Life is alot better now. Now wheres my drink?

 
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Old 01-11-2009, 05:25 PM   #10
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Re: How do I go on?

Dear Happy

Please stay that way okay. We are all here for you kiddo so write often and then some.

My mother came back to live in her own house in NJ full-time upon Dad's death when they lived in Pennsylvania. It was obvious she couldn't be alone then.

Upon moving back in with her single daughter on her side of the duplex, I would overhear that they'd be at each other's throat. it was Mom's home and she wanted things done her way and Sister was on her own for about 7 years and got use to doing things her way! This wan't immediately in 1995 but more about 2002 or 2003.

I forced Mom going to our Senior Center. It was a 4 hour a day place because each afternoon they'd go to a mall and mother said she didn't need to shop everyday. Anyway it gave them a break from each other since Sister was home and not working at this point.

Then in late 2007, they started to tell Sister that she couldn't bring her anymore because Mother was getting harder to control and they're not set up to care for someone. They were just a big room that seniors could sit in and watch TV, sew, talk, play cards, etc. Mother couldn't do any of that.

So Sister found a medical-run Day Care Center who would only take Mother 3 days a week because of a long waiting list. Mother went. But when it would take Sister 2 hours (with all the medicine and related fighting about it), she gave up taking her. Now we have a Bayaya nurse coming in one day a week for 2 hours so Sister can go to the bank and shop for groceries.

the one thing I get mad about is that Sister gives choices to mother -- what she would like to wear, what she wants to eat, what she may want to do. If mother doesn't want TV on, Sister doesn't put it on. I try to tell Sister that Mother isn't really aware of what she's answering. So I'm trying in my own way to tell you -- Happy -- don't give FIL a chance to say he doesn't want to do. I agree with everyone. Simply have him ready when the bus comes and put him on it. You will find that the dementia will get worse. If you want to classify it full-blown ALZ so be it. You will find him losing more and more as each month that passes. keep a journal or notes of some kind
on what he can do today, you'll see the changes soon enough.

 
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Old 01-11-2009, 05:55 PM   #11
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Re: How do I go on?

Quote:
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Ok here is a question for you. I was told he has frontal lobe dementia. Will he eventually get full blown alz?

Yes. Unfortunately, there is no going back if this is truly as diagnosed. It's like some of my kids (students) who think they're "kinda pregnant"...this is a progressive disease that follows specific patterns. Timelines and actions may be very different in the individual, but the outcome is the same.

Sometimes, our loved one will pass away from another challenge...heart disease, etc....but with Alzheimer's, they simply start forgetting every familiar action their body can do, including eating, swallowing, and breathing.

My Mom is in the 10 yr after diagnosis...and that little woman who had taken such good care of her mind and body has delayed "the end" because of good habits! When I visited her this past weekend, she sat almost in the fetal position in a wheelchair. The caretakers used to try to get her to walk 2 steps each day so her mind remembered...but she seems to have forgotten how to stay upright. I know it will not be long now...and honestly welcome the peace that will come to her.........Pam

 
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Old 01-11-2009, 06:35 PM   #12
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Re: How do I go on?

dear Petal

Amen dear friend, Amen

 
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Old 01-11-2009, 11:54 PM   #13
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Re: How do I go on?

Happy.... stay happy! .... and here's your drink!! You earned it today.

Pam.... Bless you!! I aspire to have the same strength that you have.

Love, deb

 
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Old 01-12-2009, 12:01 AM   #14
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Re: How do I go on?

Hey Deb

can't sleep either? I find that I get excited turning on the computer and seeing all the familiar names. It makes me feel like I'm connected to someone.

Since my Mikey passed away, I feel so alone even in a room full of people.

I really should try to go back to sleep now.

Care lots
Diane

 
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Old 01-12-2009, 12:11 AM   #15
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Re: How do I go on?

Yep..... I'm still up. Got another e-mail from sister 4. I decided my time was better spent here than answering that e-mail. So here we sit

I'm glad you are here as well

Love, deb

 
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