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this particular forum..not so active
cowboys
Posted: Saturday, June 2, 2012 7:52 PM
Joined: 12/10/2011
Posts: 338


I totally get it. Why we don't post as often as we did on the caregivers forum, we just really don't want to be here. I speak for myself, I don't really want to. Its just so sad and we are all so sad and I am so sick of all things dementia/AD! 

I thought I could come back and help the newbies..I tried but I just can't stand reading all of what I have already been through.  I just don't have it to offer and I know it is selfish.

Perhaps I could come back later, I don't know.


madamme
Posted: Saturday, June 2, 2012 11:01 PM
Joined: 12/15/2011
Posts: 149


Kim- 

 

As someone who's been "here" for a bit, it is true..this section was a bit more active before all the changes happened....people did check in with one another a little more.. 

 

I sometimes think that I have stayed too long...there were people I was keeping an "eye" on, many are gone..or silent now..I tried posting on the "other side" for a while, but I felt a bit like a ghost there, and I was feeling like that in my own life so pulled back more.  I often feel the same way here on these new boards.... 

 

{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{}}}}}}}}}}}}}}}}}}}}}}}}}-M 


SadinHeart
Posted: Sunday, June 3, 2012 6:58 AM
Joined: 12/15/2011
Posts: 403


I tried helping out and answering posts in the caregiver forum, but I started having bad dreams of my parents when they had this disease and I would wake up in the same emotional state I was in when they were alive living with this horrible disease, so I stopped reading that forum and only went to read the humor post.

 

I have tried posting here but didnt get any responses so I stopped. I think I may stop coming here altogether soon.

 

I wish all of you peace and may the memories of this disease fade from our lives and allow us to enjoy the memories of our LO's when they were free of this disease.

 

God Bless Everyone.


dayn2nite
Posted: Sunday, June 3, 2012 4:55 PM
Joined: 12/18/2011
Posts: 3097


I usually come here while I'm working.  I read a little, post a little, go back to work.

 

I've been feeling a little better, actually.  I've been working on a small scrapbook in memory of my mother and going through old pictures has reminded me of the times prior to dementia, vacations we have taken together, etc.

 

Part of why I probably feel better is I had a tiny bump in my antidepressant.  At least now when I wake up I don't want to go right to bed and I've been able to do some things.  My doctor was concerned (because I have a very long history of depression) about all the sleeping and to play it safe we are trying this.


Still Waters
Posted: Sunday, June 3, 2012 7:14 PM
Joined: 2/6/2012
Posts: 1092


I will miss all of you if you go.... It is scary for me to think I might have to make a go of it alone with out your help and advice. Its is so valuable to me.

 

But I understand...

 

 


dayn2nite
Posted: Sunday, June 3, 2012 10:34 PM
Joined: 12/18/2011
Posts: 3097


I'm not going anywhere, I'm sure this will continue to be somewhat of a roller coaster for me.
Beth in Indiana
Posted: Monday, June 4, 2012 7:33 AM
Joined: 12/21/2011
Posts: 95


I feel the same about posting 'on the other side' - a bit of a ghost.  Not sure anyone would listen anyway.  As I begin to heal, I need the site less than I used to.  I think that's appropriate and even healthy. 

 

I do enjoy catching up with you all though on your own journeys.  It's been part of the healing process, I think, for us all.  Invaluable.


KML
Posted: Monday, June 4, 2012 6:36 PM
Joined: 11/30/2011
Posts: 2105


When my dad passed, I thought I would continue to post on the caregiver side.  I wanted to help if I could.  I shared my feelings about something and sort of got a bit of a callous reply of having to explain my feelings.  So, I've decided to stay away for awhile because I have so many mixed feelings and raw feelings, I really can't take what I perceive to be a callous reply.

 

I kind of don't know what to do with myself after 13 years of caring for my dad in some shape or form.  I have a lot of anger towards other family members, the care facility, myself for not pushing harder for somethings. 

 

I've come to very much dislike people who don't do what they say they are going to do. 

 

Even the memorial service had problems, the cemetery double booked the chapel for my dad's memorial service, we had to wait an hour past our start time.  Once it started it was like fast forward, we were being rushed and I had to give my eulogy outside and people couldn't hear, even that couldn't come out right.  I'm in a funk and people are already expecting me to get over it.


Still Waters
Posted: Monday, June 4, 2012 7:42 PM
Joined: 2/6/2012
Posts: 1092


Day2night, I'm glad your staying.

 

KML. I have a feeling the callous (?) reply you are referring to was from me, asking you to explain your feelings. Looking at your father's photos. I just wanted you to know, that I honeslty don't think it would have changed the way you treated him during his illness if you were reminded of the way he was before he got sick. I think you were being too hard on yourself.


KML
Posted: Tuesday, June 5, 2012 1:20 PM
Joined: 11/30/2011
Posts: 2105


Still Waters:

 

I don't mean any disrespect, honestly I do not, but what you feel about my feelings doesn't matter, you don't know me personally, you don't know my life or situation or there's no way you would be expected to, so you are not able to understand how I feel.  I feel what I feel, and I'll work it out eventually, that is part of the grieving process.

 

I understand you may be trying to comfort me that I'm being hard on myself, and I probably am, some things from Catholic school have stuck , but I lived this particular experience with my father and I know what happened to both of us during this experience. 

 

My sister is one to tell me "to feel my feelings", but once I do, she criticizes me and tells me I shouldn't feel that way.  I don't react well when someones tells me I shouldn't feel a certain way.  Too late, I already do feel it, but I will work it out as I usually do.  Again, this is part of the grieving process, for me anyway. 

 

I do think you were trying to be supportive, but a person will feel what they do and that doesn't always have to be explained, just gently listened to.  Thanks.

 

 


Stellar Daughter-In-Law
Posted: Tuesday, June 5, 2012 3:47 PM
Joined: 12/21/2011
Posts: 280


I am so conscious of not wanting to remain too active in the world of Alzheimer's and especially on this board since this was my biggest connection to the Alz community. 

 

I have learned my lesson once.  I was diagnosed with cancer 10 years.  Lingering in the cancer world helped me process my feelings.  But I became too absorbed.  I wrote a book about the subject, became an advocate in congress, a keynote speaker.  By the time NPR and the New York Times were covering my book and story and message about the cause and the illness and my experiences, how could I say "No, maybe it would be more healing for me to just forget about this disease altogether."....? 

 

Yes, there is a far distance between talking about my Alz family experience on this board and doing it on NPR.  But tying my identity too much to this disease feels like a slippery slope.  When I am able to forget about Alz, it is cause for joy and I don't want to be tethered to this community.  When I have the need to connect, as I obviously do at this moment, I will duck back in maybe, or maybe not. 

 

I can understand well why this forum is not so active.  Perhaps it is for reasons different than mine, but I do understand.  Alz has swallowed years of my life.  I know the sadness will take some time, but I don't want to lose more time to this disease than necessary.  I cannot wait to just be myself instead of being a caregiver who needs support.


kw86314
Posted: Tuesday, June 26, 2012 8:50 AM
Joined: 1/14/2012
Posts: 10


please dont stop postting.i will always try 2 help otheres.even know i mit need extra help now My mom passed away this passed Fri.It's been really hard on me i was always close 2 my mom.now 1 of my sister's won't let me grief for our mom,she been harrashing me on facebook&yahoo.at this point i had 2 block her.If she don't stop i will put a order on her.meaing the police will give her a paper from judge 2 stop.It's 2 bad that it mit come 2 this.can't deal with this now 2 much stress.and i posted on facebook pic of the flowers we got for my mom.she said i shouldnt have post that.in the middle had my mom's urn she wasn't in it.she also said that is my fault mom has 2 be creamated.I knew she was going 2 blame me for something.But i was here visitting mom where was rest of my siblings.they always had some excuse.I tried getting them 2 come see our mom.So now its eatting on them becasue they didnt come.They all on east coast mom was in Arizona. gbu all
Nora
Posted: Tuesday, June 26, 2012 9:34 AM
Joined: 1/23/2012
Posts: 2270


I too hope that you who have experienced this tragedy do not abandon the message boards entirely. I sit here with tears in my eyes (and I do not cry easily any longer) reading your posts, feeling your emptiness, and my heart hurts for all of you. To be honest, it hurts for me too, as I expected to pass over to the other side eventually and find my solace here.

This is such a painful experience (my mother is stage 6, age 92, on hospice and lives with me). I am on the message boards frequently because I quit my job this year to care for Mom. That care entails a lot of watching and waiting and reading her mind to ensure her safety as she dozes in our front window. She does not need a lot of hands-on care just now, but eyes on is a whole 'nother story. Gives me plenty of time to read, watch TV or respond on the message boards.

Having worked at home for the past 5 years and living with Mom and a sick husband, I get very lonely. This site has been my outlet to express myself, attempt to help others and offer support, and to learn more about the disease and gain insights to my own psyche. I count on people at all stages and all phases to be there and be my resource.

Thus, while I know it is painful for you and you want to close this chapter in your own lives, I hope that you will still check in and be here when one of us calls out in our own pain.

God bless you all for what you have been through - you give the rest of us strength to carry on!
KML
Posted: Tuesday, June 26, 2012 12:37 PM
Joined: 11/30/2011
Posts: 2105


I plan on staying around and helping when I can and although I have lost both of my parents to Alzheimer's, my dad just one month ago, I still feel I need guidance and comfort, too.

 

I find when we cross over to the other side from active caregiving, we may get left behind.  People may think it's over for us, our jobs are done, we can now get on with our life.  It's not so easy as that.  Our transitions are not so swift.

 

We still need to talk through our grief.  It's another journey.

 

If I see a post where I can offer something constructive to say or offer some comfort, I'll continue to do that, because I know it's hard.


dayn2nite
Posted: Tuesday, June 26, 2012 6:37 PM
Joined: 12/18/2011
Posts: 3097


I also find that some of us are here, need to drop away for a while and then come back, which is understandable.  Sometimes thinking about dementia and all that goes with it is just too much pain.  And then sometimes we can feel a little better by sharing an experience or giving an opinion on something.  I think it's different for everybody.
KML
Posted: Wednesday, June 27, 2012 12:17 PM
Joined: 11/30/2011
Posts: 2105


That's the truth.  Sometimes we do need to step back for awhile.  After my dad passed away and I was clearing his room out, the adrenaline was still pumping and I thought I would go back and volunteer at the care facility or at least go back and visit with some the residents.  The facility is five minutes from my house and I'm not so sure now I will go back.  I wasn't happy with the facility's handling of my father especially in the last few months, so going back is going to be painful.  Although I became friendly with some of the residents in assisted living side, the ladies.  Chatting with them sometimes when I visited my dad, kind of filled in the void of talking with my mom.  I don't know if that makes sense.

 

I'm not sure I could volunteer somewhere where the care of dementia patients isn't what it should be and I had spoken with the director many times about staff shortage and training to no avail.

 

I do feel I need to clear my head of dementia but the process of moving forward and leaving it behind is slow to happen for me.


cowboys
Posted: Wednesday, June 27, 2012 2:13 PM
Joined: 12/10/2011
Posts: 338


I AM NOT POSTING NEAR AS MUCH AS I USE TO. I LURK AND SEE WHAT IS GOING ON WITH FOLKS I HAVE KNOWN SO LONG, BUT I REALLY THINK I WILL BE WEANING MYSELF OFF THE BOARDS.  I JUST DON'T WANT TO HEAR ABOUT IT ANYMORE. TOO SAD AND DOESN'T HELP ME MOVE FORWARD. THAT SOUNDS SELFISH DOESN'T IT, OH WELL SO BE IT. I SHOULD HELP THE NEWBIES, MANY HELPED ME WHEN I WAS A NEWBIE. I AM NOT READY



TODAY I RODE BY THE CARE HOME DAD WAS IN AND THE TEARS JUST STARTED POURING, I COULD NOT LOOK AT IT. I ACTUALLY PUT MY HAND UP SO I COULDN'T SEE IT. IT HAD A HUGE EFFECT ON ME. I WAS ACTUALLY THINKING OF GOING UP SOON TO SEE THE WONDERFUL CNA'S AND RN'S THAT TOOK CARE OF DAD, I MISS THEM, THEY WERE A PART OF MY LIFE FOR 4 YEARS....I JUST CAN'T BRING MYSELF TO GO YET.


@KML, I AM GLAD THAT YOU STATED THAT GRIEF IS A PROCESS. IT IS. IT IS NOT STAGES LIKE SAD, MAD, GLAD...ITS A PROCESS THAT WILL TAKE AWHILE. EACH OF US WILL PROCESS DIFFERENTLY. 


KML
Posted: Wednesday, June 27, 2012 5:02 PM
Joined: 11/30/2011
Posts: 2105


Cowboys:

 

It doesn't sound selfish at all to stay away for awhile, it sounds self-caring and that's a good thing and important thing to do.  I think it's healthy to get back to life and try and not dwell on sadness and this disease.  I think I'm a bit stuck, always takes me awhile to figure things out.  But I wil eventually figure it out, too.  

 

It's been such a long time that I've been caring for my dad, so it's going to take awhile to get used to things being different.  I catch myself thinking I have to be somewhere and I realize I don't.  It's things like that that are an adjustment and it'll come in time.  Take care of yourself, Cowboys.


hischild
Posted: Thursday, June 28, 2012 10:04 PM
Joined: 6/28/2012
Posts: 4


KML. I totally relate.  My Dad's Nursing Home is close by.  I got attached to the caregivers and other residents.   I did go back 3 weeks afternDad passed and the caregivers looked like i was a ghost.  Some of the residents had died and some didn't remember me (that was wierd). Anyway I realized that time is over for me.  I have to take time to adjust to life without Dad.  That's the hard part.
Oceanbum
Posted: Tuesday, July 3, 2012 12:08 PM
Joined: 3/11/2012
Posts: 433


Unfortunately, I'm now on this side. My Mom passed June 22. I did come here before because the information I got from those who had lost someone was so helpful. Particularly the conversations I had with SadinHeart, dayn2nite, and cowboys. You were always so honest and open with me and didn't sugarcoat anything. You told me like it was and told me what to expect. I would hate to lose anybody from this forum. I feel like we have a bond that only those who have gone through what we have gone through would understand. But at this moment I don't know myself what I will do in the future. Right now I NEED this forum. I'm only days into my grief. Mom hasn't even been gone 2 weeks yet. So I need a place to go to when I can't talk to anybody. Like now - when I am supposed to be working! LOL So as for now I will continue to come here and visit with my friends who have been such a huge help to me - some more than they will ever know.
Mimi S.
Posted: Tuesday, July 3, 2012 12:48 PM
Joined: 11/29/2011
Posts: 7036


And to all, just to come here is the reason this particular thread is here.

Like any support group, at first you are the one getting the help. Then slowly you transition into the one giving the advice.


Oceanbum
Posted: Tuesday, July 3, 2012 2:08 PM
Joined: 3/11/2012
Posts: 433


Exactly true. I used to be on an adoption forum. I started out the seeker of advice, then eventually the giver of advice. It's funny how that transition slowly takes place and without you even realizing it.
Waiting for a cure
Posted: Wednesday, July 25, 2012 11:01 PM
Joined: 12/15/2011
Posts: 295


Ah Jeesh!  I promised myself I wouldn't read the caregiver side anymore!  There's a new member posting about her mom calling 15-20 times a day.  I responded with a suggestion about phone access.  

 

I had to hold back from saying "enjoy your mom's voice while you still can hear it" don't want to traumatize a newbie.  

 

....My mom called at weird hours a lot and I wasn't always very sweet about it (I don't wake up at 3 am sweet) but oh gosh now what I wouldn't give for a phone call from my mom. 

 

 


cowboys
Posted: Thursday, July 26, 2012 8:01 AM
Joined: 12/10/2011
Posts: 338


BINGO! YOU ARE SO RIGHT ABOUT THAT. I FIND MYSELF STARTING TO POST AND THEN STOP MYSELF, WE JUST AREN'T WHERE THEY ARE ANYMORE...YEAH, WHAT I WOULDN'T GIVE FOR A PHONE CALL ANYTIME FROM DAD.....
holdin on
Posted: Thursday, July 26, 2012 9:17 AM
Joined: 7/10/2012
Posts: 10


oh boy, brings back so many memories - I just recalled the one time my mom called me a little after midnight.  She was "seeing" children (during her days of hullucenations).  I said, "mom you want me to come there?" - She said, "Yes!" I headed right over there (about 20 min ride) - when I opened the door she looked so scared and was so happy to see me.  I gave her a hug and we talked.  I told her that the medicine she was on was making her see things that weren't real (but I knew to her they were real).  She calmed right down and I stayed the night.  I would give anything for another night like that!

 

At one point mom could no longer dial the phone so we put our (her 3 kids) phone numbers on speed dial and put smile face stickers on the buttons that would reach one of us.  She was happy when she knew she could reach us at any time.  Just miss her so much!


Oceanbum
Posted: Thursday, July 26, 2012 12:19 PM
Joined: 3/11/2012
Posts: 433


Wow! I love this particular board. You guys are so there with me and understand what I am going through right now. What I wouldn't give to pick up the phone to talk to my Mom again. Before she got sick she did the bulletin for their church. She would call me about every Saturday having some sort of trouble with her computer program or printer. I would go over and help her get it taken care of. What I wouldn't give for her to call me and ask for my help again!
Marjk
Posted: Thursday, July 26, 2012 5:43 PM
Joined: 11/29/2011
Posts: 799


I also find myself going on the CG boards less and less.  I look over here first.  I can't help myself.  I'm not speaking as a peer volunteer, but as someone who spent so long dealing with such a difficult situation - but I also feel that if people weren't on those boards to help ME, I wouldn't have handled this (dealing with the disease) so well.

 

It's not as easy to read the posts on CG boards as it once was - but I can't turn my back on the people that need help.  Maybe time will change that.

 

I used to speak to my mother everyday.  Then the crazy phone calls started, dozens a day.  I don't miss those dozens of phone calls a day, but I miss the once daily phone calls that we would have.


dj okay
Posted: Friday, July 27, 2012 7:03 AM
Joined: 11/29/2011
Posts: 1840


Awww, you have all been a part of my life for so many years now.  I hate the thought that when my time comes, you may not be here for me.  Who will I be sharing my grief with?  It won't be folks like you, that know me and what I've been through, will it?

 

I miss your presence on the caregivers side and enjoy seeing you when you do join in to welcome someone or give sage advice to those in trouble.

 

But if I'm honest with myself, I guess I can see how you would naturally transition back to a world free of dementia.

 

As I read your posts, I'm trying to think how I would be, will be.  It doesn't feel like it's that far away....but who knows....


Marjk
Posted: Friday, July 27, 2012 4:32 PM
Joined: 11/29/2011
Posts: 799


I am not turning my back on the CG side, just taking a little bit of a break from it (even though I'm still reading it multiple times a day).  After so many years on here I just can't imagine not being here.

 

Many people who have lost their LO are still active on the boards.  They were and are a huge help to people are still dealing with the disease.