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to Bill and those who can no longer post but still read
alz+
Posted: Tuesday, December 5, 2017 7:25 AM
Joined: 9/12/2013
Posts: 2972


Bill - you have been a big help on the boards and I benefit from learning how you conduct yourself.

You mentioned feeling like separating more from  the boards and I understand as I too have drifted off because I just don't have the "fuel" to read much and respond properly,compared to me posting twice a day for years!

Our online friendships mean life to me and I think of so many of us every day even though I  do not post as often.

Bill, if it is a time when you want or need to be more in your day in the present and less on the boards : YOU WILL NEVER BE FORGOTTEN.

Many of us remember other board members from years ago, something they wrote that spoke to need, touched your heart, set an example, made us think.

To Paul H,  HiFi Phil, and others who no longer post - still think of you and miss you and thank you for being here.

I think the progression of this illness is so profound that it takes a lot out of us to maintain a grip on life and at times just the idea of coming to the boards is as overwhelming as going to a giant grocery or other crowded busy atmosphere.

I feel the weight you carry in always being the stand up man who is bold in making it easy on everyone else. I consider you a friend and mentor. You are always going to matter and be loved even when you can no longer handle the boards.

we fade away, we come back, we are missed, we are still friends

love to everyone



BillBRNC
Posted: Tuesday, December 5, 2017 10:55 AM
Joined: 12/2/2015
Posts: 975


Alz, thank for kind words and support. We are in this together, nobody else understands. I guess all the dementia people here soon or later die. And before that they come to not be able to post, and at some point not read, and some point don't know what a computer is, or even care. I think I am some distance from being that far down the road, but I don't know. On and off every day now I just can't seem to handle anything. Small stuff just makes me crazy. Yesterday early evening my wife wanted me to help her put Christmas stuff up in my one bedroom apartment at CCRC. For some reason, I just could not breath or think or whatever. And I almost yelled at her to not do anything with decorating, maybe another day. I could not even think about doing something, anything really, at that moment. I have these all the time. People don't seem to get it and I am over tired of trying to explain anything to anyone. Just leave me alone and let me find my peaceful space and enjoy peace and calm. This seem terrible for me to do And I do get out some every day with Doc and sometimes other people here. But people here all know they are going to die here, so even though they know they are ok for now, they just have a calm way of getting through the days. It is soothing to me. I can not believe it, but that is what I am now. I go crazy to think of letting anything mess it up. Even if I have years to go, this is where I am now in  my jounrey, and I need to be in this place for sure. My wife doesn't, so she is not, but she comes each week for few days, but that is actually hard for me sometimes, because that stirs up my zone, but I also can't live without her love and support. Big time issue for me is that I think a lot of people on this board aren't really in our world, but it seems like they almost desire to be in this world. Others are clearly in this world. I don't know why this bothers me, but it does, and I can't seem to control my feelings to well anymore. I don't wish bad times for people, but I know some of us have nothing but bad times coming our way, if not here now. Enough for now. I just wanted to thank you for your thoughts. Yes, many of us will soon or maybe later be in the group of poeple who no longer post here. Problem is they probably are not reading here either, and bigger problem is that many or most are dead or actively moving to death. Sad, bummer, but it is hard to forget it. Enough of this sadness or bummer stuff, I am going to walk Doc. Bill.
Iris L.
Posted: Tuesday, December 5, 2017 12:49 PM
Joined: 12/15/2011
Posts: 14625


To people who no longer want to post, do you want to read threads like Ilee's inspiring and silly quotes?  Do you want to read about updates on how people are doing?  Or do you want to read only about dementia?


Iris L.


BillBRNC
Posted: Tuesday, December 5, 2017 2:00 PM
Joined: 12/2/2015
Posts: 975


Alz, I just sat down and saw Iris' note. While out walking with Doc, I went over to the Memory Care place here at the CCRC. Seperate building attached to Skilled Nursing. Really nice place, really. While walking around and letting folks there pet and enjoy Doc, I thought much about things here on this board. I should say that I felt actually very at home at the MC place, which is a little scarey. They are considerably further along than me, so I hope I have some good time to go  before I go there, but I enjoy taking Doc over there to let folks pet hm and comminicate with him. 

When I saw  Iris' writing, I knew I needed to do what I had been thinking. I just don't care to visit this board anymore. It is not just Iris, becuawse I am sure she means well. But is seems that the most heavy writers here want to talk about stuff that r eally does nothing for me or my situation. Plus I have felt all along that I just didn't care for the overbearing way some folks drive conversations. I came at first to learn, but what I learned is that only a relatively few people here really know first hand about what I wanted to learn about. I can read books by people who think they know, from caregivers who know from their side of things, and the know nothing doctors, but it is hard to find real deal information from people like you and me, and others on this board. What we have to offer gets burried in all the background noise, and I don't have time, patience or desire to wade through all this to get a once in a while gem from someone in the know. So I will not be back, and I don't plan to read this board either, and this isn't something theatric or big deal. I am doing it for my reasons, that is it. 

I have some things to offer the caregivers who seem to truly desire to know what their spouses or LO feel or think, and I do know a little about that and I can offer some views that they can read or not. I think I will try to find another place where people like you and me are the people posting and responded, or at least not driven by folks who have been talkingand talking and talking for many years here. I appreciate Michael, because that guy really put in his time. I hope he doesn't have dementia, but I fear that he does, so I wish him the best. He has done a fine job in the real world trying to improve things for us, and that is truly good stuff. I not go down the list of people who have helped me, but many have, and I think they know who they are. I hope to see you, Alz+, over at the spouse caregiver board or musing. I won't visit so often, but I will check it out and post if I feel I can help them. Good luck to all of us, and I mean everyone. Bill.


Andrew60
Posted: Tuesday, December 5, 2017 5:33 PM
Joined: 7/17/2017
Posts: 95


Thank you Bill for all the knowledge you have shared.

I do agree with Bill that this forum is designed for those with dementia. I have MCI, and there is little I can offer, if any, on advice with dealing with your issues. I dont pretend to fully understand what those with any form of dementia are going through, but I can imagine its 10 times worse then what Im going through with MCI. And to be frank, I hope and pray I never have first hand knowledge of what its truly like.

You will be in my prayers Bill.


Iris L.
Posted: Tuesday, December 5, 2017 6:23 PM
Joined: 12/15/2011
Posts: 14625


Bill, I'm sorry my post asking questions upset you.  I wish you well.


Iris L.


MPSunshine
Posted: Tuesday, December 5, 2017 7:14 PM
Joined: 5/21/2016
Posts: 1625


Hi, Bill and Alz+ and others on this board. I find your posts amazing. They have helped me immensely in caring for my mom. My mom is very much past typing. She gave me a gift when she typed out a paper for me when I was in high school. She was an excellent typist. Now she is in a different reality. Now she is watching a BBC news special about the Bosnia atrocities. She finds this interesting.

I thank you. I want you to know that your insights as well as the insights of others who post here have helped me take better care of my mom, because your perspective helps me to understand her better and most important, to accept her as she is. So what if she no longer wants to type or to relate to others in a social way? It's okay. I accept her as she is.

So thank you. Take care. Godspeed.


alz+
Posted: Wednesday, December 6, 2017 7:27 AM
Joined: 9/12/2013
Posts: 2972


I totally get the calmness Bill describes when he visits the MCI section and I feel instant affection for everyone I meet with the look in their eyes of dementia. He knew it would be better for him to move out of the home he shared with his wife, for her and for him.

I also relate to what he is describing in "the little things" becoming incredibly annoying. Some days I  feel like I am walking on a beach, and some days I am in the water, and sometimes I feel myself being pulled further and further from shore and there is this sense of both fear and acceptance about it. To live where people moved to die in peace is incredibly bold.

His irritation from some posts here might be translated into - my illness is now past bucking up and trying to get better. In general people do not know how to accommodate people facing end of life. While I sometimes make sarcastic comments regarding my hospice nurse, having someone accept my condition as she does about it being terminal, is intensely moving to me. Our visits are less than 20 minutes but when she leaves I feel like I was heard and comforted in knowing she is not afraid of what is to come.

*****

I wonder if social media habits have changed the boards.

it helped me to practice ignoring comments that are not helpful to me because they may be helpful to others and we have dementia! we say stuff, blurt stuff, misread intentions - if we do not give each other a long leash in regard to responses it causes drama.

these boards are very important. everyone's experience shared here is part of changing the attitude and experience of all of us.

you can go away, and you can always come back.


Michael Ellenbogen
Posted: Wednesday, December 6, 2017 8:49 AM
Joined: 11/30/2011
Posts: 1823


I like hearing from you Bill as you have learned a lot in a short period of time and your voice continues to help others.

 

As far as dementia goes I do have some type. While I wish I did not the only thing I can say for sure it is not Alzheimer’s. Sadly, I can not say with certain exactly what type I do have. For some reason some people think its better to have something different then AD. In my opinion they are all bad and its just a matter of time.   


Iris L.
Posted: Wednesday, December 6, 2017 11:44 AM
Joined: 12/15/2011
Posts: 14625


Since my name was brought up, I feel that there is some criticism going on against me.  I can't figure out things like I used to; what is it?


Iris L.


Sayra
Posted: Wednesday, December 6, 2017 11:54 AM
Joined: 8/10/2016
Posts: 658


Bill I have always enjoyed your posts.  If you don't feel like posting that is ok.  I for one will miss them though.
SweetiePie
Posted: Wednesday, December 6, 2017 7:23 PM
Joined: 9/11/2015
Posts: 85


Bill, I will miss your posts.  You share many qualities with my husband and have given me a lot of insight into his experience.  Thank you.
Mimi S.
Posted: Thursday, December 7, 2017 8:50 AM
Joined: 11/29/2011
Posts: 6040


To all,

This site is designed for all of us who have some type of dementia. Those with MCI are part of that group. There is a very fuzzy line between the worst of MCI and the earliest stage of dementia.  What one doctor may diagnose as MCI, another will diagnose as dementia. 

And I also don't worry about the type of dementia. In the beginning phases, the symptoms may be quite different, but as time progresses there are more similarities than differences. That being said, finding the exact type is important, since meds and methods vary.

Some folks are here several times a day, others when there's a crisis.  Many who come for help, progress and turn into helpers. 

We all, at some point, need a break from thinking about dementia. There are joke and religious themed sites for that. 


alz+
Posted: Friday, December 8, 2017 7:59 AM
Joined: 9/12/2013
Posts: 2972


Iris, I get the impression some people wish we were all at the same point in the illness and it is hard to take some days that some people seem to be functioning better and longer than some of us.

Eventually members learn to take a wider perspective or ???

I snap at people if they suggest I could do better than I am, like the hospice nurse told me to stop being anxious. I got an attitude right away about that until I read something you wrote about my mess being a reflection of my illness and BOOM, you are right.

Just be yourself, people are so stressed over politics + holidays + terminal illnesses + everything else, .... lost my train of thought.

love you, love us all



llee08032
Posted: Saturday, December 9, 2017 9:12 AM
Joined: 5/20/2014
Posts: 3883


Mimi,

Greatly appreciated reading your post. Thank you. 

When I hear others are doing well it gives me hope and I am happy for that person. Things can quickly go downhill for anyone of us here on the board regardless of label, type or diagnosis. We've all been through a lot over the past year here. 

I can't pull this post together right now. But I'll be back. Damn it!


llee08032
Posted: Sunday, December 10, 2017 8:31 AM
Joined: 5/20/2014
Posts: 3883


Hate when people leave the board. (((((((Bill))))))) I have enjoyed your company and wish you the best.
alz+
Posted: Sunday, December 10, 2017 9:48 AM
Joined: 9/12/2013
Posts: 2972


Hi L lee!

My impression of what Bill said was "not as much" here, and we all have those days when we quit the boards if we have been here awhile.  I faded away too and then had crisis and how sweet it is to come back and just be bathed in great advice and kindness.

I am going to brag here:

some how I changed my email font to a miniature ant size. It only took my 96 hours to find the thing to tap to make it go back to 125%.

hey hey hey. I am home alone as Keeper went to  visit his kids and my friends got sick and canceled trip so I took a 100mg GABA last night to see if it would help with nerve pain down my left leg. I  slept 9 hours, straight. If the dog tried to wake me she couldn't.

The effect was again a lot of energy and I  walked dog the 1 mile up and down circle already. No way  to know if this tiny dose would energize anyone else but it did help the leg pain too.

I have the house to myself for another 6 hours!!!!!    



jfkoc
Posted: Sunday, December 10, 2017 11:30 AM
Joined: 12/4/2011
Posts: 13474


Your smiley faces make me smile too!

Is GABA GAbapentin? Luke (dog) was taking Tramadol but it was changed to Gabapentin last week. He seem so be in less pain.

I will look into changing a font. Did not know it was possible.


llee08032
Posted: Monday, December 11, 2017 7:11 AM
Joined: 5/20/2014
Posts: 3883


((((((((Alz))))))))
 
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