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 "11 Ways to Stop Caregiver-Related Depression" 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: "11 Ways to Stop Caregiver-Related Depression"
JeanneG wrote:
I figure I'll start looking tomorrow for a civic association I could head up. Come to think of it, many of them do appear to be run by persons who are not mentally well. I always thought they were in a manic episode -- who knew they were just trying to work their way out of depression?
Well said, Jeanne. Let me know what 'civic association' you are heading and if it helps 'STOP Caregiver Depression.' Note the goal in the heading of the article is to STOP it. :roll: 'Working your way out' is not enough.

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


Thu Feb 24, 2011 9:08 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: "11 Ways to Stop Caregiver-Related Depression"
I think #3 (talk to friends) has to be used with caution, too. Except for my friends here on the forum, I feel like I need to govern myself not to talk incessantly about LBD issues to my friends for fear of boring them to tears or whining them to death. If you're not in the Lewy battle, there is really no way to relate!

Julianne

I also agree. Before I met you guys, I used to talk to my friends about Dad, but I think they just didn't understand. I felt they were at the point where they were thinking, 'Oh no, here we go again', when they saw me coming. They thought I was exaggerating his aggressive behaviour, and his delusions. People just don't understand, unless they are in this situation. I have an aunt and uncle who visit once a month, if not less, and they always say how good Dad looks, and ' I don't see how you can say those things about him'. Inevitably, the day they call Dad is having a good one. What a shock they would get if he had one of his outbursts whilst they were there. It annoys me so much that they think thy know it all from 1 visit. :x

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cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Feb 25, 2011 8:09 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: "11 Ways to Stop Caregiver-Related Depression"
Ger, look up "showtime" in the search engine on this site. You will find a lot of discussion of relatives not seeing the dementia behavior, at least until later in the course of the illness when the LO can no longer do showtime. I had the same experience with my mother until her condition progressed. It's hard to wait it out, but things will change.

Julianne


Fri Feb 25, 2011 8:49 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: "11 Ways to Stop Caregiver-Related Depression"
thanks julianne, I'll do that

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cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Feb 25, 2011 8:54 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "11 Ways to Stop Caregiver-Related Depression"
Coy plunged into Lewy at the deep end. He was unable to do showtime. He was diagnosed in June. (Paranoia, delusions, hallucinations, agression, etc.) In September I was hospitalized for undiagnosed diabetes (which my doctor kept insisting was caregiver stress). Our five kids divided up each day and took care of him for a week. He progressed (with treatment) from that horrible start to a fairly mild early stage. Although his behavior often appears quite normal now our kids have never questioned for a minute that he has dementia! Friends and other family, though, can't see what the fuss is about. So he's a little forgetful. Seems perfectly OK. Sigh.

(BTW, the kids took it upon themselves that week to research nursing homes, just in case I didn't recover sufficiently to be a caregiver. As I say, they don't doubt that caregiving is a lot of work!)

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Feb 25, 2011 9:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: "11 Ways to Stop Caregiver-Related Depression"
Sounds like your kids are a real blessing, Jeanne! Congrats on raising them so well! :P

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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.


Fri Feb 25, 2011 10:01 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: "11 Ways to Stop Caregiver-Related Depression"
JeanneG wrote:
(Paranoia, delusions, hallucinations, agression, etc.)
Dale's first major symptoms were all of these too. That was in January and February of 09. After medication, he was almost normal until this past November.

In December 2010, it all came back. I mistakenly thought that was all over and that with medication, that behavior would never return. I was wrong. I'm living with it all again.

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


Fri Feb 25, 2011 11:22 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: "11 Ways to Stop Caregiver-Related Depression"
poor you Leone, it really is such a rollercoaster. We are the same with Dad. He has a few good days, and all is well. Then, bang, back downhill again. No matter how many times we tell ourselves to watch out, things will go backwards again, we still live in hope that maybe, just maybe, this time the good phase will last.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sat Feb 26, 2011 12:05 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: "11 Ways to Stop Caregiver-Related Depression"
I think the fluctuations are one of the hardest things about the disease. Upswings can create false hope and downswings are so discouraging. Actually, my mother is currently in a moderate upswing as far as her ability to speak and understand. I should find a way to enjoy it while it lasts but instead I am just holding my breath for what comes next.

Julianne


Sat Feb 26, 2011 12:41 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: "11 Ways to Stop Caregiver-Related Depression"
You are only human, Julianne. I don't know how many times I have told myself to live in the here and now, and like you I keep wondering about tomorrow, and dreading it. Its so much easier to say than to do when you know for certain that things will once again decline.
hugs to you all

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sat Feb 26, 2011 4:04 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: "11 Ways to Stop Caregiver-Related Depression"
You are right, Ger, but like you I am the sibling taking the brunt of the responsibility for my mother (not her actual physical care, as she is in an SNF, but there are still lots of other things she needs). That's part of why it gets so overwhelming, though when I read what many of the forum members do and endure, I feel like a real whiner!

Julianne


Sat Feb 26, 2011 4:12 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: "11 Ways to Stop Caregiver-Related Depression"
Julianne, Will you stop - you are not a whiner - this is such a difficult job, and just watching our LOs going downhill mentally and physically takes its toll on us all. My husband has often said to me that even though he works long, difficult hours, and is always exhausted, he would prefer his job any day of the week because he can come home and forget about it, but I can never stop worrying, or waiting for the phone to ring. I am sure you are the very same. It is so emotionally and physically draining, so never feel you are not worthy of praise for all you do. Keep up the good work, and be proud of all you do. We all know how difficult this journey is, and we are entitled to moan now and again - thats what we are here for. Never, ever underestimate what you do for your LO. xx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sat Feb 26, 2011 4:44 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: "11 Ways to Stop Caregiver-Related Depression"
Ger wrote:
Never, ever underestimate what you do for your LO. xx
It is a thankless job and there are no prizes for the caregiver who is suffering the most. We are all hurting!

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


Sat Feb 26, 2011 5:57 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "11 Ways to Stop Caregiver-Related Depression"
Leone, once in a while your responses sound kind of barbed to me, but having gotten to know you through many responses I doubt that you mean them that way. Just to clarify, did you mean to imply that anyone is trying to claim the prize for suffering the most? I didn't read any of the previous posts that way.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Feb 26, 2011 6:27 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: "11 Ways to Stop Caregiver-Related Depression"
I didn't read them that way either.

I was trying to say that those whose loved ones are in nursing homes have just as much 'hurt' as those of us who live with Lewy 24 hours a day. I know because my mother was in a nursing home for 4 years before she died in September.

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


Sat Feb 26, 2011 9:16 pm
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