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Does anyelse find it sad and defeating?
markus8174
Posted: Wednesday, March 21, 2018 8:06 PM
Joined: 1/25/2018
Posts: 687


Does anyone else find it just a bit sad and defeating that for every topic, there are like 2000 views but only 4 replies? Either there is just no hope to be offered, or no solutions to anyone's problem. Unfortunately, I fear both those observations may be true. I find myself desperately scrolling through topics in search of  some evidence that the fates haven't just taken a Titanic dislike to me, and that there is some light in this increasingly bleak black pit of despair that my life seems to be slipping into. EW!, With a depressing rant like this, I see 4000 views, 2 reply in my future.
ladyzetta
Posted: Wednesday, March 21, 2018 9:22 PM
Joined: 2/16/2017
Posts: 951


Hi Markus

Here is a reply to your post.  

I also find it odd there are so many post with only a few replies. It seems to me that a few people seem to get a lot of replies. So be it, I still find a lot of good advice by reading them all.

I used to post often but when things started not being nice I decided reading was about all I was going to do. 

Sometimes I find it hard to reply, usually because I have no advice and sometimes people misunderstand and then the war starts.  You take care. I am out here and I care. Zetta 


ruthmendez
Posted: Wednesday, March 21, 2018 9:58 PM
Joined: 9/8/2017
Posts: 2315


Hi Markus!  I think it's just people see the responses and move on to the next...I guess.  You just joined, hang in with us.  Lately I've been hanging out more at Musings because I like to just mess around sometimes.  Although, Musings shouldn't be about that....but it gets me through.
ndhme
Posted: Wednesday, March 21, 2018 10:08 PM
Joined: 5/31/2015
Posts: 1156


here you go...a 3d reply

some people just read, looking for information that may be useful to them as they navigate this disease

some people read but don't reply because they feel they haven't experienced the situation yet so they don't have useful information to impart

then people read and as they read the responses already there, they feel they have nothing to add to the info imparted already


Jim Broede
Posted: Wednesday, March 21, 2018 10:08 PM
Joined: 12/22/2011
Posts: 5462


There’s a solution (of sorts) to every problem, Markus. Unfortunately, most solutions are impractical or cost prohibitive. Or tossed in the laps of people who don’t care. Sad, isn’t it? I’ve found solutions to most of my problems. By refusing to give up. By clinging to hope. You say that your wife’s decline has been relatively slow. Over the past 7 years. That’s a hopeful sign. Try to think of it as a modest blessing. My dear Jeanne fought the fight for 13 years. Gave me time. To learn to be a better care-giver and a better lover and a better human being. I’m still benefitting from the experience. --Jim


TiggerPooh
Posted: Thursday, March 22, 2018 3:09 AM
Joined: 2/15/2018
Posts: 94


Hi, Markus, Here is reply five, so you did it! You caused us to think a little and respond. Yes, there are others like you, partners to someone facing a slow decline. I am one of them. Yes, it may sometimes seem like rearranging deck chairs on the Titanic. But yes, we can hold each other up.
BlossomsPack
Posted: Thursday, March 22, 2018 6:01 AM
Joined: 2/21/2018
Posts: 83


Markus, I am new here but I hope "there is some light in this increasingly bleak black pit of despair that my [your] life seems to be slipping into." I have to go attend to my family, but here is a lifeline! Throwing it! I hope you can catch it!
BethL
Posted: Thursday, March 22, 2018 8:46 AM
Joined: 3/25/2015
Posts: 698


Some people's problems they write about are so numerous, and so awful, that addressing them all in a reply takes a lot of thought and energy. And often I just don't have the energy.

I also agree with what's been said in the above responses.

And then, there are or have been some mean people here and I don't want to chance engaging with them. (Most of the persons here are nice, though.)


jfkoc
Posted: Thursday, March 22, 2018 9:08 AM
Joined: 12/4/2011
Posts: 19073


and then there are some threads that we follow almost like a blog....Loretta's is one of those. Few post but an enormous number read and learn about here life with her cows.
Bob Sacamano
Posted: Thursday, March 22, 2018 11:13 AM
Joined: 1/31/2012
Posts: 499


This forum (or any other popular forum) is a bit like a talk radio phone-in show. Only a smattering of those who listen will phone in with comments or opinions.
llee08032
Posted: Saturday, March 24, 2018 10:24 AM
Joined: 5/20/2014
Posts: 4405


and yet another reply...and all very good replies I might add. We may not get what we need all the time. But the fact that we keep coming back say's something. That something is that we need to be here for each other. It is in the giving that we get back. We all have something to offer and sharing our stories, posts and replies does help and benefit others. Helping someone else out of they're black pit of despair helps you. A thought came to me the other day "don't wait until your dead to be an angel." I've met angels on this board. May your burden be lightened today. (((((((Markus))))))))
Jim Broede
Posted: Saturday, March 24, 2018 12:52 PM
Joined: 12/22/2011
Posts: 5462


I tend to find what I want to find. Whatever makes me happy. In the moment.
BlossomsPack
Posted: Saturday, March 24, 2018 1:07 PM
Joined: 2/21/2018
Posts: 83


Markus, I do hope you have emerged from this dark place at least for today.
Jim Broede
Posted: Saturday, March 24, 2018 1:12 PM
Joined: 12/22/2011
Posts: 5462


Not only for today. But for the rest of your life. Look at it this way. All things are possible.
Alexander_Green
Posted: Sunday, March 25, 2018 6:35 AM
Joined: 3/9/2018
Posts: 37


I sincerely hope you have rallied, Markus!
Jim Broede
Posted: Sunday, March 25, 2018 7:07 AM
Joined: 12/22/2011
Posts: 5462


This is a wonderful thread, Markus. You've stimulated lots of thought. Lots of participation. I like it. I like it. I like it. It's nice to sit back and read. And feel stimulated. I read and reread this thread. And find something new to ponder each time. This place is becoming more alive. Every day. My gawd! What an improvement. We're headed in a good direction. Wonderful balance. Wonderful participation. Wonderful learning. Are you feeling better about everything, Markus? -Jim
ThisLittlePiggie
Posted: Sunday, March 25, 2018 7:19 AM
Joined: 2/19/2018
Posts: 44


Yes, Markus, I have noticed it too.
llee08032
Posted: Sunday, March 25, 2018 11:20 AM
Joined: 5/20/2014
Posts: 4405


Jim Broede wrote:
This is a wonderful thread, Markus. You've stimulated lots of thought. Lots of participation. I like it. I like it. I like it. It's nice to sit back and read. And feel stimulated. I read and reread this thread. And find something new to ponder each time. This place is becoming more alive. Every day. My gawd! What an improvement. We're headed in a good direction. Wonderful balance. Wonderful participation. Wonderful learning. Are you feeling better about everything, Markus? -Jim
We've been mused by Markus and others participating. I like the direction we're headed in also. Thank you Markus and everyone!

llee08032
Posted: Sunday, March 25, 2018 11:23 AM
Joined: 5/20/2014
Posts: 4405


A warm welcome to you Blossompack. I've been enjoying reading your post.
TiggerPooh
Posted: Sunday, March 25, 2018 12:01 PM
Joined: 2/15/2018
Posts: 94


Markus, Many have noticed the same phenomenon. Do you want to stay in this place or would you like to move on?
markus8174
Posted: Wednesday, March 28, 2018 2:00 PM
Joined: 1/25/2018
Posts: 687


I many times leave this site near to tears because I see such hopelessness in so many posts. I guess I'm still looking for some hope but I'm not finding it here. I keep coming back though, so something must be here that I need. When I was working I frequented a message board similar to this for people in my profession (Nursing). The conversations were sometimes depressing, but many times they were lively, supportive, or just funny. It always lifted my spirits when I was having a rough day at work. I guess the difference(at least for me) was I was the old man in Nursing. Been there and done that, and had an answer or opinion for almost every problem. Mentoring the new staff and commiserating with nurses my age was therapeutic. Now, despite 6 years with this diagnosis, I'm the newbie. Up until now I didn't need much support. My spouse was a bit forgetful, but other than picking up a few extra responsibilities, it didn't really hit home, (where we were headed). Seeing the posts on this board takes away my ability to live in denial. I see the hell I have coming and don't know if I have the courage to be the good husband I have always tried to be.  



BlossomsPack
Posted: Wednesday, March 28, 2018 2:12 PM
Joined: 2/21/2018
Posts: 83


markus8174 wrote:

I many times leave this site near to tears because I see such hopelessness in so many posts. I guess I'm still looking for some hope but I'm not finding it here. I keep coming back though, so something must be here that I need. When I was working I frequented a message board similar to this for people in my profession (Nursing). The conversations were sometimes depressing, but many times they were lively, supportive, or just funny. It always lifted my spirits when I was having a rough day at work. I guess the difference(at least for me) was I was the old man in Nursing. Been there and done that, and had an answer or opinion for almost every problem. Mentoring the new staff and commiserating with nurses my age was therapeutic. Now, despite 6 years with this diagnosis, I'm the newbie. Up until now I didn't need much support. My spouse was a bit forgetful, but other than picking up a few extra responsibilities, it didn't really hit home, (where we were headed). Seeing the posts on this board takes away my ability to live in denial. I see the hell I have coming and don't know if I have the courage to be the good husband I have always tried to be.  



Markus, I was very surprised at how the support group really helped. It seemed like people were really willing to focus on who was talking and offer each person something. I left feeling listened to and part of a community and that was a nice feeling. I think that's why it's hard to leave message boards like this. In a way we are all in the same boat and the particulars are slightly different, but maybe we can give each other tips to make the travel just a little better. Somewhere I read to prepare for the worst, but then to try to enjoy the present moment the most possible, not to front-load our worries, and to have some fun along the way, and that somehow made sense to me. I think you are actually doing that by traveling with your wife. That ship has sailed for me, I think, but I certainly wish the best for you and I think everyone here hopes you have a great time.
Mickey Dog
Posted: Thursday, March 29, 2018 9:35 AM
Joined: 3/29/2018
Posts: 2


I agree.  Why so many views and yet no replys.  I though we were dealing with similar issues.
TiggerPooh
Posted: Thursday, March 29, 2018 2:14 PM
Joined: 2/15/2018
Posts: 94


Mickey Dog wrote:
I agree.  Why so many views and yet no replys.  I though we were dealing with similar issues.


Mickey Dog, We are all at different phases of dealing with this disease. Some of us are in the midst of it. Others are in the "after" phase. I believe that many did not feel comfortable posting here before but many new people have made it more of a place anyone can land softly.


Sunrise-Addict
Posted: Friday, March 30, 2018 11:24 AM
Joined: 3/26/2018
Posts: 49


There seems to be more input lately.
Blaize
Posted: Sunday, April 1, 2018 11:48 AM
Joined: 10/7/2017
Posts: 32


markus8174,
Often I have wanted to reply to a post. 
I'm one of guilty that reads, cries and relates but I'm "relatively" new and what can I offer? Empathy, yes, virtual hugs, yes, wanting to take your pain and throw it away for you because I feel it too? YES! Are those the posts you want to read or do you want to read the posts with great suggestions, intelligent replies, things to try, things not to try?  Most times I don't feel I can offer those "yet" so I stay quiet.
It doesn't mean that others don't care, like me they may feel they have nothing of substance to offer.
But. . . you did get me to post my first reply

DavidsSon
Posted: Sunday, April 1, 2018 2:07 PM
Joined: 3/29/2018
Posts: 14


Hi, Blaize, The people here are nice. I found a lot more replied on the Caregiver forum. My wife and I take care of my dad in our home. I'm sure if you have a dilemma or something going on that you will receive a lot of responses.
Blaize
Posted: Sunday, April 1, 2018 4:58 PM
Joined: 10/7/2017
Posts: 32


Thank you DavidsSon,

I have been lurking on the Care Giver Forum, just happened in to the Musings this afternoon.

. . . and yes, there is lots going on. 


Sunrise-Addict
Posted: Sunday, April 1, 2018 7:57 PM
Joined: 3/26/2018
Posts: 49


Hi, Blaize, Glad you posted and if there are any questions or situations you are having, I hope you know this is a good place to ask, or to share your own observations.
abc123
Posted: Monday, April 2, 2018 11:51 AM
Joined: 6/12/2016
Posts: 1187


Markus ~ I think you have the courage you will need for this journey with your wife. I think she is blessed to have you stand in the ring with her, stand in the middle of the fire with her~ as llee would say. 

Yes there is sadness here, and depression and negativity but that's part of our lives at times. We can make our hearts and homes joyful and spirit filled. It's not always easy but we can do it.  


kellly
Posted: Monday, April 2, 2018 2:43 PM
Joined: 6/12/2015
Posts: 1131


Markus, I used to be a lot more active on these message boards but not so much lately. I was curious about the chat rooms since I had never been on a chat room before, so one evening I participated in one for a while. It was different from the message boards in that the people participating were on their "down time" in the evening and the comments were hilarious! Talk about taking a burden off, I laughed out loud at some of the things people posted. So clever! So witty! So funny!

It's not all doom and gloom, it's just that the message boards are generally about asking for help and needing ideas. Every so often someone will post something very funny (I guess that "funny" depends on your personal sense of humor, too), and the chat room I was on was a great, refreshing change from the seriousness of the message boards. There are people who try to post uplifting comments, Bible quotations, moral support or other encouragement. When you're in a caregiving mindset pretty much 24 x 7, sometimes it's hard to pull out of it and become your own person, even if just for a little while. 

I hope you're feeling better getting all these responses and that they help you reframe your situation here somewhat.


Sunrise-Addict
Posted: Saturday, April 7, 2018 1:09 AM
Joined: 3/26/2018
Posts: 49


I think it might be interesting to try a chat room.
Jim Broede
Posted: Saturday, April 7, 2018 1:59 AM
Joined: 12/22/2011
Posts: 5462


I'm for trying, trying, trying. Everything. Leaving no stone unturned. In the quest for peace and tranquility. The ultimate happiness. --Jim
Gig Harbor
Posted: Saturday, April 7, 2018 10:54 AM
Joined: 3/10/2016
Posts: 662


I posted the city I lived in and three delightful women reached out to me. We get together every few weeks for an hour or two in the afternoon to talk and have a glass of wine or tea. We are in different stages of this disease with our spouses and we definitely are a support group for each other. At this point none of us have joined the local support group although I do plan to do that.
BlossomsPack
Posted: Saturday, April 7, 2018 12:37 PM
Joined: 2/21/2018
Posts: 83


Gig Harbor wrote:
I posted the city I lived in and three delightful women reached out to me. We get together every few weeks for an hour or two in the afternoon to talk and have a glass of wine or tea. We are in different stages of this disease with our spouses and we definitely are a support group for each other. At this point none of us have joined the local support group although I do plan to do that.

Hi, Gig Harbor,
I love this idea. I wish I didn't work full time. Also, the four kids keep me busy. Not to mention husband and mom. That's why I rely on the support from the web.