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SadinHeart
Posted: Friday, May 18, 2012 1:55 PM
Joined: 12/15/2011
Posts: 403


dayn2nite... I logged in and saw the back and forth you had in the spouse board and honestly one thing I have always believed is that people say the truth when they are angry.

 

There is one post from a man that says that you dont have any business being on their board. I take that to say that since you didnt deal with a spouse, but a parent, then they dont want to hear from you. How sad. How very sad.

 

I guess it's hard for people to listen to what we have to say because we have already been there done that. People dont want advice, they just want someone to support what they're doing so they can feel good about it.

 

I am trying to post as much as I can to help people deal with the sadness and loneliness that this disease brings to our lives, but after reading so many posts attacking you, the least I want is to come in one day and read the same on my posts.

 

I am starting to see the end of my using this forum. Maybe it's best to let everyone deal with this on their own and the best way they can, like I did, and let them experience things as they happen.

 

 


dayn2nite
Posted: Friday, May 18, 2012 2:00 PM
Joined: 12/18/2011
Posts: 3097


Yes, I knew that was going to come out eventually.  I'm leaving them alone.  I've been told I can't accept mom's death, that I'm pushing them around, etc.  The one guy had a big blowup with Stephanie the nurse (who gives SO much help on the CG board) because she made a remark about men that he felt was offensive.  He kept going on and on and on about it.

 

They're angry, that's all.  I think there's a solar eclipse coming on the 20th also.  Part of why I was encouraging (not pushing) placement was because the OP said on his original post that he had "lost it" and screamed at his wife because she was screaming.  I just had a lot of sympathy for her because I can't imagine what it's like to be a woman with dementia and have your husband screaming (and that was the word used) because you are screaming.  He has since deleted that post.

 

When I made the remark about posts I've seen before on the boards, I actually had the CG board in mind because there have been more than a few martyr-ish people there, but oh well. 

 


SadinHeart
Posted: Friday, May 18, 2012 2:06 PM
Joined: 12/15/2011
Posts: 403


I can tell that they are angry and I can sympathize with that because this disease brings a lot of anger out in people mostly due to the helplessness you feel. I know.

 

Sometimes I read a thread and want to give an advice, but I back off because I realize that what I want to say is not what they are going to want to hear.

 

But think about it, we have been through everything they are going through and will go through and it would benefit them to hear what we have to say, not attack it, but at what price.

 

My husband says that this forum is keeping the pain alive, not the pain of the loss of my parents, that pain will be with me forever, but the pain I feel for all these people that are now going through what we went through.

 

But if I am helping at least one person with my experience or with my advice, then it is so worth it for me.

 

I dont know, the jury is still out on this one, maybe it is time to go. We'll see.

 

 


dayn2nite
Posted: Friday, May 18, 2012 2:15 PM
Joined: 12/18/2011
Posts: 3097


SadinHeart wrote:

 

Sometimes I read a thread and want to give an advice, but I back off because I realize that what I want to say is not what they are going to want to hear.

 

My husband says that this forum is keeping the pain alive, not the pain of the loss of my parents, that pain will be with me forever, but the pain I feel for all these people that are now going through what we went through.

 

But if I am helping at least one person with my experience or with my advice, then it is so worth it for me.

 

I dont know, the jury is still out on this one, maybe it is time to go. We'll see.

 

 


I need to learn to discern better when to say something and when not to. 

 

Your husband is like my brother--they feel we are "dwelling" on pain.  I think men have a harder time understanding the bond a daughter has with both her parents.  I think the saying goes "a son is a son until he takes a wife, a daughter is a daughter all her life" and that's how it is.

 

I was thinking about it and with dementia, our parents really become our children.  I never had children, but I honestly felt that I had lost my mom, my best friend and a child all at the same time.  I bathed her, changed her, helped her dress, fed her, comforted her--it's as close to a child as I'm going to get.


cowboys
Posted: Friday, May 18, 2012 4:04 PM
Joined: 12/10/2011
Posts: 338


yeah I agree ladies, I just told Homer I won't be back on that forum. wow...angry is right. I was simply browsing for help for my mom but stumbled upon the martyr thread. OY! I'll just stay here where I belong now. I want to help the newbies like you but I just can't go back and start at the beginning with them now...maybe later.
SadinHeart
Posted: Saturday, May 19, 2012 6:06 AM
Joined: 12/15/2011
Posts: 403


I removed my post about grieving because I dont want anyone to take it the wrong way. They may think that we dont have another option but to accept it and that they do have options because their LO is still alive. Well, we've been in those shoes and know that there are no options.

  

You pretty much live one day after the other watching your LO deteriorate and nothing you do will help. That's why I need to stop replying to posts about meds because I know those meds dont do a darn thing and I refuse to give anyone false hope. But then comes other people to say how it's helping, bla bla bla, really? how? delaying stage 7 so you can watch your LO bedbound wearing a diaper and being fed pureed food? is that humane? not to me, not for my parents and definitely not for me. At that point, it is time to let go.

  

I found it easier to start letting go once I accepted that my dad was going to die. I found peace in my heart the moment he died because I had accepted it. Did I want my dad to die, of course not, did I have a choice, no.

 

Same goes for NH. I chose not to put my dad in a NH and did all I could to keep him at home, but we had the financial means to hire a private caregiver. There is no way I could have taken care of my dad, so it worked out for us. My mom refused to stay home with a private caregiver. We took her to see ALF's and she loved them. My mom adjusted fine and the ones she was in were very nice and when she could she enjoyed  the ALF and all the activities they had.

 

Then here comes my far away brother to question what were we doing putting my mom in an ALF and said something to the fact that "that was not our way". Really? So I told him why didnt he come here and take care of mom or better yet, why didnt he even take her to his home for two weeks when she asked him several times and he refused. So now it's not "our" way that my mom be cared for in an ALF.

 

But as I said in another post, there are no bad NH just absent families. Those nurses are overworked and underpaid, they dont care because they dont have the time to care. It is the family's responsibility to stay on top of their LO's care. But a lot of people have a sense of abandonment when they think about putting their LO in a NH and that is why so many people dont do it.

 

So then you read posts of people complaining of being covered with feces all day and some even saying that they wish they LO would die already. Humm... how about letting professionals take care of your LO and you can be the loving person they need you to be? No, better not say that, that will be insinuating that they are bad people. No way to win so best to not give advice.

 

 

 


Still Waters
Posted: Saturday, May 19, 2012 6:45 AM
Joined: 2/6/2012
Posts: 1092


Good question.

 

To debate this topic I will post on the CG Discussion Board.


SadinHeart
Posted: Saturday, May 19, 2012 8:35 AM
Joined: 12/15/2011
Posts: 403


SW...  do what you think is best for your mom and what you can live with. Make a decision and feel good about it.  What matters is that your mom has 24/7 care.

 

If you decide to let her stay in the NH, then just be there for her and dedicate as much time to her as possible.

 

If you decide to take her home, do your research to make sure you will have the proper help to provide the 24/7 care she needs.


dayn2nite
Posted: Saturday, May 19, 2012 1:02 PM
Joined: 12/18/2011
Posts: 3097


...and they continue posting on and on about how much more intense caring for the spouse is and complaining that when they post honestly it's not respected.  A parent, a spouse, six of one, half a dozen of the other.  That's what I mean about the martyr posts...the only person who has it harder than caring for ANY person with dementia is a person who is caring for TWO people with dementia, which many people are doing. 

 

I can't even imagine going through all the stuff at home and in NH with my mother if it were my mother AND someone else. 

 

That's what irritates me.  I at least allow for the fact that a spouse and a parent are similar in intensity in loss, but across the board for the entire time I've been on the boards, the spouses insist their loss is worse and/or different than mine.  The OP of the lost thread even said that with spouses one "never expects the other to die first".  WTH?  Nobody dies?  Someone has to go first, I guess he thought it would be him and his wife would deal.

 

In the same vein, I've seen people minimize the experience of someone who cares for an in-law.  I don't get that either.  It's just as valid to have all the feelings for an in-law as any other person close to you.


cowboys
Posted: Saturday, May 19, 2012 6:15 PM
Joined: 12/10/2011
Posts: 338


I like the way you think Dayn2nite..I couldn't believe when Homer actually (oops not suppose to mention his name) was upset that I dare to be on their forum. I won't be posting there again, they don't want to hear that you could possibly experience as much pain as they do. I even said on my post that I understood how much harder it is on a spouse. I have had a front row seat to that, watching my mother grieve my dad when he was still alive! She knew him when he was a young man, she has loved him 64 years..I get it!! they belabor that point of view over and over and over.


dayn2nite
Posted: Saturday, May 19, 2012 7:50 PM
Joined: 12/18/2011
Posts: 3097


True!  When I've had advice that works for them nobody complains, but oh boy let me say something they don't like and it's a pile-on and threatening to get me kicked off==but somehow I'm still here.
SadinHeart
Posted: Saturday, May 19, 2012 8:30 PM
Joined: 12/15/2011
Posts: 403


People dont want to hear the truth.  Reminds me of that movie with Jack Nicholson and Tom Cruise "A Few Good Men" when he says "YOU CAN'T HANDLE THE TRUTH!!!". that's how it is.

 

Sometimes it is very hard for me to be a "yes" person because I know what the person is saying/doing is not good for them, but why rock the boat, you are going to get put down for not agreeing.

 

I remember the comment you made to someone about them not paying the hospital staff that does the discharge. LOL. That was funny but very true.

 

Having gone through this journey does not make us experts but it does make us more understanding of the disease than a lot of these people that are still going through it.


dayn2nite
Posted: Saturday, May 19, 2012 9:40 PM
Joined: 12/18/2011
Posts: 3097


LOL, it was true!  The poor social worker works for the hospital and probably is overworked and underpaid, like most people are everywhere.  There is a certain amount of footwork the CG needs to do, and if they start at the Agency for Aging that's a good catch-all for most of the programs out there. 

 

As an example, I was paying for incontinence products the first year mom was in the NH.  As her disease progressed, I swear I was paying like over 200 bucks a month and I was getting a good price from Sam's Club on the briefs.

 

Mom was on Medicaid and I kept thinking--how do the people who are on Medicaid and have no family get their incontinence products?  So I look up "Medicaid Incontinence Michigan" and up comes all the information on the incontinence program for Medicaid recipients.

 

I printed it out and got her signed up--from then on the NH ordered her stuff through the contracted Medicaid provider.

 

Did I expect that the NH social worker tell me all about this program?  Not really. She has 85 residents and a constant barrage of "stuff" going on every day.  When I really started thinking about it, I realized there must be a program and I found it.  I should have thought about it when she first was admitted.

 

The NH staff didn't mind me providing them because when she was running out all they had to do was call me and I'd come running.  Much easier than getting a special delivery from the supplier I would think.


SadinHeart
Posted: Sunday, May 20, 2012 6:32 AM
Joined: 12/15/2011
Posts: 403


People that are eligible for Medicaid get a lot more benefits than someone who paid for a LTC policy.  My parents both paid for a LTC policy and we were barely able to use it. It would not kick in until you needed assistance with two ADL's (activities of daily living) and medication management was not one of them.

 

By the time my mom was able to use it she was in stage 7 then you have a 60 days waiting period and they dont pay the facility directly, we had to pay the facility ($3790) at the beginning of the month and submit a receipt, they would reimburse us on the middle of the following month. My mom's LTC only paid for 1.5 months of the 10 months she was in an ALF.

 

We also had to pay for Medicare Part D and a supplemental insurance that paid Medicare deductible and copayments. We had to pay for the copays for her medications every month.

 

Not all Medicaid NH are bad. We found one in South Florida that was very good and very nice, had latin style meals, all staff members spoke spanish, but they only accepted Medicaid.

 

We had to pay for my dad's private caregiver in cash every month and we had to pay my mom's ALF in full for months until she needed assistance with two ADL's. We always had to pay for her diapers and anything else she needed, the LTC did not pay for that.

 

Was my mom able to afford the ALF? yes thanks to their savings. Her social security income was 50% the cost of the ALF, the rest had to come from savings which would have eventually run out.

 

So my parents paid so much in taxes and never got 1 cent of assistance, they had to use up their savings that they worked very hard to save and restricted themselves of many things to be able to save money for their elder years.

 

For me, I am planning to spend all my money traveling and paying off my debts so that when I get old I dont have any money and I can get Medicaid and all the assistance I can get to pay for things.

 

I looked into getting a LTC policy but I am not going to spend $1,600 in premium a year in a LTC policy so that in the future it hardly pays for any of my care. I'd rather spend down my money and qualify for Medicaid so the taxes I am paying all these years can be put to good use, me. LOL

 

 


George K
Posted: Sunday, May 20, 2012 6:55 AM
Joined: 12/16/2011
Posts: 2818


Once again, I thank all of you for your experience. 

 

The thing with me is I was so involved with caregiving for my wife that I wasn't giving any to myself.  When other people told me I needed to take care of myself FIRST, I just didn't get it.  I thought no one else understood, and for sure no one else could take care of my wife as I did.  And that last part's true.  It was only a few weeks after I was forced to place her in a nursing home that I understood just how insane my own behavior was.  I guess that's called denial.  This damned disease may not be physically contagious, but it sure is emotionally contagious.  There was a period of about five months where I never slept for more than two hours at a time; I was getting a lot of cat naps instead.  I was angry, lonely and frustrated.  And that became normal for me.  Today I can see how I was as out of touch with reality as my wife was.  I guess we all have to go through a hell of our own making before we can find the peace you guys are offering.  I'm not sure why I'm posting this on this board, except you've all been through this process while others are still going through it.

 

My current dilema is this: my wife has never had a sister.  Lately she's been mourning her sister's loss.  At first I told her that her sister was in school, I tried distracting her, and now I just let her do it.  It lasts about ten minutes, then she forgets for awhile.  I've learned not to judge my insides by someone else's outside.  I realize I've been judging my wife's inside by her outside.  Do you think it's possible she's at peace on her inside?  Probably no one knows, but I do want her to be at peace, something I know is out of my control. I hate what this damned disease does to people.

 

Once again, I thank you for sharing your journey.  I wonder what I'll do if I survive my wife, I know I have to mourn her loss again, but I think I'd want to go through it instead of living with it or holding on to it (if that makes any sense?).


dayn2nite
Posted: Sunday, May 20, 2012 7:07 AM
Joined: 12/18/2011
Posts: 3097


We ran through her retirement, my retirement and all savings by the time she was admitted to the NH.  I thank God for Medicaid being there-I don't know what we would have done without it.

 

I am regretful that I cashed in my retirement account to keep her at home longer--it really didn't keep her home that long and I of course have had to start saving all over again.  That was a bad decision on my part, but can't be undone.


SadinHeart
Posted: Sunday, May 20, 2012 7:10 AM
Joined: 12/15/2011
Posts: 403


George, if you don't mind me asking and forgive me if you do, how old are you?

 

Your wife is at peace inside that body. When we say that AD is like a rollercoaster ride, we mean it in both ways, for us and for them. Her brain is in AD mode riding a rollercoaster. Part of the brain is drying out so the part that remains is going every which way.

 

You cannot, I repeat you cannot get yourself caught up in what someone with AD says. Realize that it is not them saying it, it is the brain, and in what mode is the brain? exactly.

 

I had days that I would come home crying hysterical after spending time with my mom in the ALF because I would listen to what she said and the next day, mom was perfectly fine. So I learned to detach. I would go and spend time with her and just go along with what she said.

 

If missing her sister is making her sad, then tell her that her sister is fine. She went on a trip, etc.

 

My mom use to say that my dad was walking around outside in the garden that was outside her bedroom window. At first it freaked me out and I had to walk out of her room to cry, dad had been dead for 5 months, but then I realized this was her brain talking. So I told her yes that dad wanted to get some sun or if it was at night I told her he had gone to strech his legs. She was happy, I was sane.


Dave
Posted: Sunday, May 20, 2012 6:45 PM
Joined: 5/20/2012
Posts: 1


Hi George

My name is dave my wife was diagnosed with dementia in 2005 and rapidly progressed to alz, i too used up my 401 savings caring for her till it became impossible vfor me to give her the care she required she went into nursing home july31 2009, she passed away April 13, 2012

It seems ironic to me that we were married on Friday March 13th 1964 and she left me on Friday April 13th 2012. I never thought that i would survive my wife the loss you feel is unbelieable painfull i miss her everyday thank God for my daughter and her husband a 3 grand kids and a great grandaughter and another due end of this month. Hang in there george i know everyday is a challenge but with family and friends you will survive


Cheryle Gardiner
Posted: Sunday, May 20, 2012 11:33 PM
Joined: 11/30/2011
Posts: 529


Against my better judgment, I'm logging on only long enough to offer my love and support for all of you.

dayn2nite, I saw how you were treated in the Spouse forum, and I was appalled! I don't think the separation of the forums was ever meant to cause that kind of behavior. My mom died after a lengthy illness (not dementia) 20 years ago; my husband is deteriorating daily. The two losses really are very different, but they are equally painful. There is no reason to compare the two. For someone who has never married, what could be more painful that the loss of a parent? For someone whose parent died when they were young, what could compare to the pain of the loss of a spouse? This isn't a contest to see who suffers the most; it's a forum, IMHO, where we can offer help and support to each other. The reason I'm no longer here is because the new setup was frustrating and I wasn't able to be the help that I wanted to be. Then along came He Who Shall Remain Nameless_E_S and there has been more and more divisiveness. He is a dividing person, plain and simple.

I grieve for all of you who have lost someone - spouse, parent, sibling, in-law - it doesn't matter. It's horrid. I grieve for all of us who are losing someone we love. Not all of us can keep our LO at home. I couldn't. But I can be his wife, his best friend, his advocate, the person who light up his face when he sees me. I can give him the privacy and respect he always wanted by not being the one to change his Depends or give him a shower. I can give him ME - and that was and is the right choice for us.

I didn't scream at him, but on the day I berated him for complaining about pain while refusing his pain medication I knew we were on the road to the Care Home. I couldn't live with myself if I were verbally abusive to him, and we were headed there because of his inability to understand and my inability to cope when I was so sleep-deprived myself.

I don't know if any of  you are religious, but I will offer this bit of wisdom to you from the Bible: "If anyone will not welcome you or listen to your words, shake the dust off your feet when you leave that home or town." Matthew 10:14 


 

Blessings to all of you. You are heroes. If you want to email me, I am at boomergran at gmail dot com.


George K
Posted: Monday, May 21, 2012 7:31 AM
Joined: 12/16/2011
Posts: 2818


Hi Dave, In the past few years I've had my mom, two sons, a niece, and my best male friend die.  Still, the worst day of my life was the day I felt I had to place my wife in a nursing facility.  Every day I thank God for their wives, five grandchildren, and especially two great-grandchildren.  No matter how lousy the day may have been, their smiles and hugs bring light and lightness to me.  It's sorta ironic; my wife and I got together March 13th, 1975.

 

Hi Cheryle, thank you for checking in.  I, too, try to be the best person I know how to be, and by coming here I grow in love, peace, and understanding.  I often wonder what happened to some folks from the old site.  It seems to me it was a more loving,  intimate and understanding forum. The people who posted there knew feelings are neither good nor bad, they just are; they knew choices aren't right or wrong, they're healthy or unhealthy; they knew it's more important to be loving than right.   It seems now that some posters are more judgemental than gentle.  The way I look at things is we're human beings; not perfect beings.  Native American's have a philosophy of don't judge me until you've walked a mile in my moccasins.  I've found a lot of peace by connecting with people who have either been through what I'm going through, or are going through it now.  For some reason that brings me comfort, I guess it's strength  in numbers.   But I'm more cautious with what I post nowadays, and that's a shame because venting used to be a safe outlet.  

 

Hi SadinHeart, I don't mind that you ask how old I am.  And if I did mind, I'd forgive you.  I do try to detach from my wife's behavior and love her exactly as she is; it's just that I want her to be happy, and I know that's something I'm not responsible for, although I still try.  I think it's something like being around a baby; I try to get them to smile.  I also know I try because it makes me feel better.  Most people I talk to agree it's my wife's brain and not her spirit that this damned disease affects.  One of the things I do is visualize the words, "WOUNDED CHILD OF GOD" written across her forehead.  That helps me detach from her behavior.  The distance from my head to my heart appears to be about 18 inches.  One of my problems is that when I learn something in my head  it takes about 18 years to get to my heart.   LOL

 

Once again I thank you for letting me grieve before one of us dies..

 

 


SadinHeart
Posted: Monday, May 21, 2012 12:30 PM
Joined: 12/15/2011
Posts: 403


No matter how old you are there is still a lot of living to do. Your wife is blessed to have you in her life next to her battling this disease.

 


dayn2nite
Posted: Monday, May 21, 2012 4:28 PM
Joined: 12/18/2011
Posts: 3097


Cheryle, thanks for the support.  I'm over them anyway, they have very fixed ideas about how things need to be for them and the only thing I can do for them is pray they outlive their ADLOs so things don't go sideways should a catastrophe occur.

 


SadinHeart
Posted: Monday, May 21, 2012 5:16 PM
Joined: 12/15/2011
Posts: 403


I don't agree that people were nicer on the old board, I see the same type of communication and some of the same people. It gets out of hand sometimes just like it did on the other board.

 

You have to have thick skin to belong to a forum where people are annonymous. People will say what they think and give their opinions. Some people are too sensitive and will take things the wrong way, but it doesn't mean the other person was being harsh.

 

I dont like to be a "yes" person. I like to give my opinion. After all, it is my opinion.

 

If someone just wants people to agree, then a forum like this may not be the best place to ask a question because you are not always going to get an answer you like. Actually I think people are very very nice considering some of the things that are said and asked here.