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 Am I Dead? 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Am I Dead?
I was only in the shower for 10 minutes and found Mom with a tragically confused look on her face. It took her several minutes to tell me what she was thinking. In a nutshell, it was "I just realized that I'm dead." Insert all of the pauses and searching for words that I know you know were there.

On Friday night, she just got the word "dead" out. This was while my visiting sister and I were trying to remind Mom who she (my sister) and her daughter are. Her daughter is 21 and I could see how much this was shaking her. At the time, I didn't think Mom was talking about herself. I thought she was asking who was dead, and since no one we know had died recently, I assumed she meant who among her family were gone and who were still alive. I'm afraid I shocked her terribly when I told her that my father, the love of her life, died 40 years ago.

I know this isn't unusual. My grandparents asked the same question a number of times. When Mom told me she thought she was dead, I just briefly assured her she was quite alive. I made a mess of it on Friday when telling her who died and who was alive.

What do you respond to these thoughts and questions?

This was a week of change, with Mom doing her first wandering on Monday night and this weekend not knowing her daughter and granddaughter. It's not that I am really afraid of these downturns. It's more the disappointment in knowing that Mom has lost even more. For me, knowing these things are part of a known progression helps me accept them. But I hurt so much for Mom and for my family, especially those who only are able to see her occasionally and see the huge changes from one visit to another.

I don't know how to respond to Mom's questions about death and I don't know how to get family members through the shock of each visit. I still want so much to make everything right, though I know I can't.

Help?

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]


Sun Oct 24, 2010 9:18 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Am I Dead?
Hi Kate - I know how shocking it is for LOs who can't visit often. My kids are always pretty upset when they see my dad even though I try to keep them up to date via emails and phone calls. It doesn't seem real until they see him. I think that is about all we can do - try to keep people updated and tell them to try not to act shocked when they see how bad off our LO is.
Sorry, I have no idea how to handle the talking about death. I may have to know that sometime myself, but so far my dad knows who has died and doesn't ask questions, but he cries a lot about my mom on weekends.
Take care and hang in there Kate, you're doing a great job. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Oct 24, 2010 10:01 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Am I Dead?
Kate,

Do you have the help of hospice yet? I would highly recommend getting their help if you don't have it already. It could be that your mother's questions/assertions that she is dead have to do with her thinking about dying and preparing for her own death.

The standard thinking behind questions about loved ones who have died is that you do NOT affirm that someone is dead. You re-direct by asking a question like "Oh, I really love dad. Can you remind me again how you and dad met?"

Robin


Sun Oct 24, 2010 11:00 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Am I Dead?
Kate, Oh My Gosh! Ken has said more than once recently, first thing in the morning "Mumble, mumble, mumble, dead." and I thought he was saying he wishes he were dead but he may wake up thinking he is dead. I hate this. I hate this disease. I hate what it has done to all of us. Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Mon Oct 25, 2010 10:07 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Am I Dead?
Kate,
I am total agreement with not mentioning people that are long gone only because we really don't know where the mind of an LBD'er is when they ask, I don't think I was ever asked by my husband if he was dead but I do remember how many times he asked me if he was going to die!

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Irene Selak


Mon Oct 25, 2010 5:50 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Am I Dead?
Quote:
but I do remember how many times he asked me if he was going to die!
And you told him what? :?:

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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.


Mon Oct 25, 2010 6:44 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Am I Dead?
Pat,
When Jim asked if he was going to die, I never lied to him I always told him yes but not today :!:

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Irene Selak


Mon Oct 25, 2010 8:38 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Am I Dead?
That's good. I always tell Derek, "Not anytime soon. You'll probably outlive me!" And he probably will.

_________________
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.


Mon Oct 25, 2010 8:57 pm
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
Post Re: Am I Dead?
Kate,
Several months ago, my mom thought she was dead. When she woke one morning, she first told me that her mom had died but by the time her bath was over with and I had her up in her wheelchair, it was she who had died. I asked her what she wanted for breakfast and she said "dead people don't need to eat." At first, I didn't know how to respond and I got a mirror to show her that she was alive. She said the mirror didn't prove anything so I just tried to change the subject. When my husband, who is a minister, came home for lunch, she told him that she was dead and that I didn't believe her. She told him to prepare a sermon for her funeral which was going to be held over the weekend. This went on all day and evening. At bedtime, mom reminded my husband to get someone to preach for him that coming Sunday as he would be in another state having her funeral. Thankfully by the next morning, she'd forgotten all about it. Very weird day for all of us. This only happened one time, for which I'm very grateful. Indeed, this is a very strange and frustrating disease.


Mon Oct 25, 2010 10:12 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Am I Dead?
Dear Kitkat:

Your post makes me smile because of several references you've made that seem a bit close to home. Let me introduce myself.

1) You live in Florida and we live in Ocala. 2) We called my daughter Kitkat when she was a little girl. Her name is Kathryn. 3) My late father was a minister. 4) My mother wanted to die and God wouldn't let her. (She passed away at 104 on September 19th.) There were several times when she thought she was dead and our dad was still alive 'fooling around without her' and that annoyed her. (Our dad died in 2002.)

I hope I've made you smile too.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Oct 30, 2010 6:39 pm
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
Post Re: Am I Dead?
Yes, Leonne, you made me smile too! And--I'm only about 45 min. from you in Brooksville. My mom was able to hold her great-grandson again today which made me really smile. She's going down more and more each day and I don't think she has many days left. She would only drink 1/4 ensure and a couple sips of water today and hasn't urinated at all. Will have to call hospice tomorrow if she doesn't go. She's also refusing to take any meds. I was hoping she'd make it for 2 weeks as her grand-daughter & her baby are coming from KY Thurs, then my brother the following Thurs, but it doesn't look good at this point anyway. Going to try to get them to come on earlier if at all possible.


Sat Oct 30, 2010 10:54 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Am I Dead?
I sincerely hope the kids/grandkids make it to see your mom in time. I hope my kids get to see their grandfather one more time, and hopefully he will know who they are when they get there. It's a sad time. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Oct 30, 2010 11:50 pm
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