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 total panic setting in 
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 741
Location: LA
Post Re: total panic setting in
Kate, you have given me food for thought. Thanks. I will check back in.

A project to look forward to. I hope I can wait until after my birthday. I don't want to push it though. Here is the way I will weigh the change. The price of funerals rising but I'm earning interest on my CD. I may need a Home and assistance but I'm working to stay at my own home.

I believe it is time for me to fill in the blanks and go to the funeral home for a discussion with my trusted funeral director. [I should think of the blank contents in the funeral home application now. Make an Appt. with funeral home owner, Susan, after September] See? I have a plan!

I'm a procrastinator but when I decide to do something, I take it and run with it. Stand by for the next chapter.

Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Tue Jul 10, 2012 4:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: total panic setting in
We both wrote it into our ADs years ago that we did not want funerals or services of any kind and both want cremation. At that time, money was not a concern. We just didn't want the trappings. There is no room in either of our family graveyards, anyway. Once we both are gone, our kids can decide what to do with our ashes. We won't care.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Jul 10, 2012 6:46 pm
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: total panic setting in
Kate:

You hit on the right word in your reply to me.....sacrifice. Sacrifice is a concept I'm quite familiar with. You see, in addition to being a wife and a caretaker, I am also a mother of two children (from a previous marriage) - one of whom was murdered at the tender age of 2 & 1/2 years old. When my daughter died, I vowed I'd do whatever it took to make sure my son had a happier childhood, and that I'd sacrifice my own happiness in this noble and very loving quest.

I have struggled with my feelings about being a caregiver....really struggled. But when my husband was in the geriatric psych ward at a local hospital recently, I had the time to really think about my husband's disease and how it is impacting him. And I thought a lot about our marriage and the vows I took the day I married him. And my mind once again thought about the word sacrifice. That's when I realized that if I could make sacrifices for my son years ago, I could do the same again for my husband....who, during his remaining time on earth deserves to have someone by his side, making sacrifices to keep him safe and happy, and also deserves to be at home for as long as humanly possible.

My husband has lived a good life. He raised four wonderful children, taught social studies for 30 years in New York, helped organize and direct many young theater groups in New York, taught at the college and university level, acquired a BA, a MA and an EdD, was an amazing tutor and mentor to many young adults, and has written a lot of poetry. The love poetry he's written for me still brings tears of joy to my eyes and warms my heart in ways that I will always treasure. Since we've been married, he has traveled all over the U.S. with me. He really is a kind, gentle and loving man, and very worthy of all the love and sacrifice I am willing to give him. I just think it sucks that he ended up with a disease that has changed him from being an extrovert to being an introvert, and that he now is a shell of the man he once was.

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Beth


Wed Jul 11, 2012 12:09 am
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: total panic setting in
I wish I had some better ideas. Lewy robs away so much beyond the loss of our dear ones' cognition: time, dignity, socialization, planning...the list is endless. Someone said take it a half hour at a time. It's good advice, but so hard to follow.
Sacrifice, your heart is burned pure with a life of sacrifice. You can walk this trail with your head held high.
I'm truly, truly sorry to read that after living a parent's nightmare you are thrust into this new torment. Take strength from the good will found in this forum.


Wed Jul 11, 2012 6:40 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: total panic setting in
Beth,
Yes you are right it does suck for a person to have this disease, any person, no one desreves this in their lives and I think the best we can do it love them with all that we have until the end and beyond ! Once I excepted my husbands fate with LBD which I want you to know was the biggest hump to clinb over. Life became easier with my exceptance I stopped looking for the reason for everything and just cared for him and above all just loved him each and every day and tried to find something happy each day no matter how little it was even if was just to stop and smell a flower.

I know how hard this is on many of you and I am sorry for that but it is hard when they are gone too ! They just stop suffering but we don't !

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Irene Selak


Wed Jul 11, 2012 7:36 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: total panic setting in
Dorthea,

As long as you are healthy, you don't need to rush. We put Mom's money into her funeral account only a month or two before the Medicaid application and it was fine. As a matter of fact, I put additional money into the account the day before she passed, knowing what was coming. Not a problem at all. But then, by Minnesota statue, there is a hierarchy for creditor payment out of a deceased's remaining funds and reasonable funeral costs come first. Most states now have a database of statues and search engines to make use of them easier than ever. Check to see if your state has one and then do a search on "probate."

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Jul 11, 2012 8:53 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: total panic setting in
My God, Beth. I can't even imagine what you have gone through, but the death of your child horrifies me. And to lose your child in a violent way is the worst thing I can imagine. I have a coworker whose child was taken and they have no idea what has happened to her. Though a brilliant man, it is obvious the loss has destroyed him. You are exceptional and to be admired for pulling yourself together for the sake of your son. And now for your husband.

I have no words for you about a reward in the next life. That isn't part of my belief system, though I do believe in God. I do try to find something good, even if it is very small, that has come out of the worst times in my life. But even that is too much of a challenge for the losses you've suffered. I have no children of my own and never married, but I would be so devastated if I lost one of my well-loved nieces or nephews (and now the children they are bringing into the world). I know that, as a mother, your grief must have been so much more than that. I can say no more than that my heart goes out to you and even that seems inadequate.

I am so glad you have your husband's poetry to remind you of his love and why you married him. Not everyone has that. I'm not a poet, nor a reader of poetry, but I now see that poetry or other writings have great value once a person can no longer say the words you need to hear. He sounds like a fabulous man. And you are an amazing woman. No matter what comes, don't forget that.

Best wishes,

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Jul 11, 2012 9:14 am
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