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Not sure where to post this, so will leave it here
TheirLittleGirl
Posted: Wednesday, January 31, 2018 7:10 PM
Joined: 12/23/2016
Posts: 56


I'm sure I'd be "attacked" (for lack of a better term) if I left this on the Caregivers board. I've been on this site for around 4 or so years now...just over a year with this screen name. (lost password)  At any rate, my sweet Dad, who I cared for for several years after my Mom died crossed over in July. I don't know why I keep coming back here to read posts...I truly don't. What is really bothering me though is the change of the "tone" on the Caregivers board. It truly used to be one of compassion and holding each other up for being a caregiver. Support and words of encouragement when someone needed a shoulder, to vent or to ask a question and hear opinions of others. It just seems like people are getting so nasty with each other, almost taking their own frustrations out on each other rather than supporting each other. I know that there a lot of newcomers...and it seems like less volunteers are posting. I guess I'm still coming here to have some sort of "connection" with my Dad but there are so many negative vibes anymore that I've held back from recommending this site to other caregivers/ family members of Alz victims. I've been a nurse for 30+ years and used to recommend this site all of the time. Not anymore. I just can't do it and I do believe that my time has come to put this site behind me as well. Bless all of you loving, compassionate caregivers that didn't throw down the victim card and understood the true meaning of care giving. Namaste.
Veterans kid
Posted: Wednesday, January 31, 2018 11:26 PM
Joined: 10/17/2014
Posts: 1240


I’m glad you posted here.  I don’t know for sure, but I think that a lot of people read this forum,  but may not necessarily post. I’ve always felt and still do, that I get a lot of support here if I’m asking a direct question etc. It’s sad, but I agree with you, that the tone of the board has changed over the past few years. I used to read posts back in  ‘13 and 14 before I ever joined.  The vibe now is a lot different and I agree, people are more apt to attack rather than accept and support. I do think there are enough people who get it… That the little things and differences between us do not measure up to the similarities and what we have in common.  I do know that without the support from many people here, that my journey would’ve been a lot different along with my dad. And I know it was better for us both for us both!    I learned, I asked questions, and at some point I was able to offer a suggestion. That’s what we do as caregivers, hold each other up and support each other through every stage of this hateful disease! I understand your feelings, but I hope you do come back,  you’ve been a very good and supportive participant on this board and I myself am grateful for that! I’m sending you virtual hugs and pop tarts and soft hugs

Julie 

Always be VK 


His Daughter
Posted: Wednesday, January 31, 2018 11:30 PM
Joined: 6/25/2014
Posts: 2230


Namaste,  OH MY GOSH GIRL!   Thank you for posting your name (which I remember) because I wouldn't have known you through your new screen name (Their Little Girl)

It's not fun being on this board  (Caregivers who Have Lost Someone)  I'm really sorry about your loss.  And I hope you're doing ok.    

I'm sorry that you are having a hard time on the Caregiver board.  But I understand why you keep coming back.  Even though my dad passed two years ago, I still go to the caregiver forum in the hope of answering questions and lending an ear to those that are struggling.  There's probably nothing worse than being a new caregiver!  

You've been here long enough to know that over our time, it seems we've always had a few problems here and there.  And dare I saw, even some people, who are routinely pretty abrasive.  It happens.   But there are just some people I don't read, or totally skip their posts. Or even those that I read, but don't/won't respond.   Currently there's a new topic I just can't participate in.  (Guessing you know which one I'm referring to)  

So let me salute you, with your own words, because you certainly deserve them:  Bless all of you loving, compassionate caregivers that didn't throw down the victim card and understood the true meaning of care giving.

I'd like to share a final paragraph from my book.  I'm sure you can relate.

At times, the full scope of things that lie ahead of me was very overwhelming.  And other days, I looked forward to getting things done and my own life back.  My own house was a complete disaster. I hadn’t cleaned a drawer or cabinet in my home for at least four years, and my dining room had simply gotten worse.  I knew that eventually I’d get it all done.  But I also knew it would take a very long time.  This long journey with my father, would have snatched five years of my life before it was totally finished. But unlike all other “projects” in my life, this one took the largest tole.  Not only did it take the final person who could refer to me as “my daughter”,  it took my business and working life, the early years of my new marriage, some of my time as a mother and grandmother, and even a physical and emotional tole on my body. I say this not to whine and complain, simply to acknowledge the truthful facts.  Yet even knowing the cost, I never would have made any other choice.                 

  

Please don't leave, Namaste.    We're all needed by the "newbies" who are just as scared, tired and alone, as we once were.  We can help them through.


Wgonzo
Posted: Thursday, February 1, 2018 7:18 AM
Joined: 1/8/2016
Posts: 328


Hi there! I'm so sorry for your loss. My mom passed 4 weeks ago today. This is such a horrible feeling trying to navigate our loss & emotions.

I'm sure I've read your posts & maybe you have replied to mine, but I agree with VK & Hisdaughter and what they have to say. If it wasn't for you guys who were in this before me I didn't know what to do or how to cope. And, as hard as it is to come back and read current posts I still want to help.

Yes, sometimes things get heated and words are misspoken or not. But, we are only human and on this site very emotional. So, things shouldn't be taken to heart. For example when I was in the throws of my mom passing I was in the parking lot of the facility in front of a driveway waiting to find parking. Well,  a man in his car asked me if I was going to park or not because he was going to put his car in the driveway. Well, I bit his head off. He caught me at a bad time. Nobody really knows what is going on in our lives at a given moment. So, yea we can get pretty heated when a sensitive subject or comment is made.

Don't leave. These people need us.

Once a caregiver always a caregiver

Wendy


KML
Posted: Thursday, February 1, 2018 2:03 PM
Joined: 11/30/2011
Posts: 2098


I've been on the boards since 2007 (under a different name).  I joined when my father was newly diagnosed, he passed away in 2012, but I still come back here from time to time.  I guess I still need that connection with those who have been through similar circumstances and who understand.  It was the place I found comfort and advice.  I don't visit the caregiver forum too much.  Sometimes I do, if there is something I feel I can offer to someone in the way of information and/or comfort, offer some help.

I've seen the board change in a lot of different directions over the years.  Sometimes there seems to be a streak of negativity, sometimes there's judgment, sometimes there is unselfish support, it comes, it goes, it ebbs and flows.

You can always come here.  I learned a long time to take postings with a grain of salt, I embraced the good stuff, and tried to ignore the negative stuff.  There's a lot of people and everyone has their personalities and style and I just gravitate to those who I feel offer the most good.

You take care.

 

 


MPSunshine
Posted: Thursday, February 1, 2018 4:44 PM
Joined: 5/21/2016
Posts: 1840


Hi, TheirLittleGirl, I'm not sure I ever met you. I joined in 2016, in the spring, just at a point when we were thinking seriously that my dad's hospice might go on past my ability to stay, and we ended up bringing him and my mom to our home. I am sure my posts at the time I was first posted were: angry, baffled, outraged, surprised, anguished and lonely. People here took it all in stride. I received excellent advice. I completed the move of dad and mom to my home and things settled a bit. I tried to give advice where I could, drew back a bit when I could, and meanwhile lost my dad. That was over a year ago, and honestly, I am still recovering. I think that persons who arrive here all are at different stages. The problems in care giving or care partnering are numerous and complex. (They continue to be numerous and complex since I am taking care of my mom and plan to continue to do so in our home.) So, I would take all the high emotions and any snippiness with a grain of salt, try to remember when you were there, if you ever had high emotions or snippiness, and take the short replies as what they probably are: a stressed person with a short minute to give a response. Welcome back, if you care to stay, I would like to get to know you.
jfkoc
Posted: Thursday, February 1, 2018 4:52 PM
Joined: 12/4/2011
Posts: 15614


I hope you will stay with us. I found much continued help after my husband died.
Because she's my mom!
Posted: Friday, February 2, 2018 1:01 AM
Joined: 12/15/2011
Posts: 737


I am so sorry for your loss. I, too, have noticed changes in the "tone" of the board, but that seems to come and go. I joined in 2006, and was active until my mom passed away in the summer of 2015. During those 9 years people were mostly very supportive and helpful. There were a few over the years who were "snarky" now and then, but they were in the minority. I just chose not to read their posts. I sincerely hope that there are those who continue to  be supportive to the Newbies, like "his Daughter", KML, and others.  I don't visit the board very often, but try to be supportive when I do.

 


Mimi S.
Posted: Friday, February 2, 2018 1:41 PM
Joined: 11/29/2011
Posts: 6561


Hi Namaste,

I'm so glad you posted.

Yes, there is, unfortunately, sometimes negativity on the Board. Sometimes, it is attributed to those under great stress who don't realize how their words may be taken by those also in stress. It's so easy to say: ignore. It's harder to do: ignore. The arrow is shot, it hitds and several readers are hurt. 

There are presently fewer Peer Volunteers.  We are hoping to remedy that situation.

I found I go through different phases in support groups. At first, I am grabbing whatever help i can get. As time progresses and things are settling down, I find myself helping others through my own experience.

Do stay with us.

 


Sayra
Posted: Saturday, February 3, 2018 7:40 AM
Joined: 8/10/2016
Posts: 1010


Like the others I find enough good here to stay here.  In all parts of our life there are those who love drama and those of us who hate drama.  Everyone is welcome here so we are going to get a lot of different types of people.  When I see a certain post is becoming dramatic and opinionated I don't go there anymore.  This disease causes me a lot of stress and I am not going to read anything that will cause me more.  That is one thing I can control lol.  It's the only place where I can find someone who has any idea about what I am talking about.  There are a lot of kind people here.
Jo C.
Posted: Saturday, February 3, 2018 8:43 AM
Joined: 12/9/2011
Posts: 9048


Hello, TheirLittleGirl; it is good to express yourself and to share what you are feeling about all of this and I do understand why you decided to place your Thread on this particular Forum.  I really do get it.

Sayra has a very good outlook and one that many of us try to follow.   I have been on the Message Board since 2006.  Over time, I have noticed that the Message Board, like any other Message Board, will have periodic fluctuations of "tone" depending on the individuals who are present and posting during particular time periods.  It is ever-changing. 

The best of times is when the Members stick to the intent of the Board for healthy support, follow guidelines, and are not drama driven or special interest prone.  Once in awhile, we go through periods where things are not quite that way, but that eventually passes.

The Board's intent is to have this be a safe and supportive place dedicated to the Caregivers; to provide kind ears, emotional support and helpful information and even experiential wisdom from those who have been in similar situations.   I truly love this special place and the dear people on it who are doing their best under trying conditions. 

Sometimes, some people seem to forget that this Board is NOT a personal entitlement; it is a very generous gift given by the Alzheimer's Association, and that is no small thing and it is also very expensive, but the Assn. is dedicated to this support which helps so many.   I will be forever grateful to them for this as it has also helped me through some difficult times.

Some forget the Message Board is a gift and also forget that when they joined this site, they agreed to policies in the Terms and Conditions posted at the bottom of the page, as well as the Guidelines which are posted at the top of the page, and tend to use the Board to broadcast and harangue personal issues and/or personal biases.  This behavior can also be off-topic at times.

Admin. gets feedback from Members using the Report and/or Contact Us functions.  Those Members may not be responding on the actual offending Thread or Post, but many do use the aforementioned functions.  Some do not report but feel so turned off they do not come often or they leave, that is unfortunate as Admin. really wants and needs to hear feedback from the Members.  The offensive Threads/Posts out of Guidelines and Policies are not at all what the Board intends and the Administrative folks take the better good of the whole Membership as well as those who are not Members but who "lurk" and read, very seriously.

I so hope that you think about this a bit; you have so much experience and wisdom from your journey and you could be helpful to others who are newer and you are always welcome as part of this extended electronic family that overall, mostly understand each other.  By the way, you may Post on any Forum on this Board, you are not bonded to one place secondary to the relationship your Loved Ones with dementia had with you.

This is a difficult time, but I so hope that you stay and share with others, you have much to add.  Sometimes we need a little break after those all consuming caregiver years, that is understandable, but you are always very welcome and are a positive influence for those who are new at this unwanted journey as well as those who are farther along the path but still in the caregiving role.

With warmest thoughts being sent your way,

J.


TheirLittleGirl
Posted: Monday, February 12, 2018 7:53 PM
Joined: 12/23/2016
Posts: 56


Thanks, Everyone. I appreciate your input and feedback. I'm so sorry for the pain all of you have experienced with this horrific disease. My family and I just passed the 1 year mark of my MIL passing away in our home on hospice from lung CA which is why I haven't logged on in a while.  I was her caregiver as well. Hey, I'm the nurse in the family...it's almost like a Mother Superior position...everyone thinks I have all of the answers. I wish that I did. All I know is that I've tried to honor the elderly in our family, take care of them the best that I could and help them pass peacefully. I sure hope that out of my 5 children and 7 grandchildren that at least one of them can help me when it's my turn! Since Dad died of Alz back in July I've done a lot of rumination. The thought that keeps forcing it's way to the front/ top is "OMG! I'M going to end up with Alz, too!" I know it can be genetic...or luck of the draw. But, Dear Lord...I don't want my children to have to deal with this again. Not in their Momma. I watched "Still Alice" again the other day and it got me thinking. There ARE ways to combat this demise. I'm not afraid to die, far from it. I'm afraid of lingering in a state of non existence that my family has to bear witness to. Ugh. I've already engaged my oldest daughter to promise me she'll bleach and pluck my mustache until the day I die. Nobody wants to look at THAT hot mess! LOL...and I digress. Thank you, loved ones of Alz victims...for being a safe place that I could come and and read, vent, ask questions of and cry with.  You've touched a piece of my heart that I've not let anyone else in to. You'll forever be in my prayers.
KML
Posted: Tuesday, February 13, 2018 12:03 PM
Joined: 11/30/2011
Posts: 2098


A few things you said in your last post that struck familiarity to me.  Mother Superior.  My dad would call me that behind my back.  Not in a good way, but it was me who had to ease him into each transition he went through, it was me who got him to take a shower, to eat enough, to drink enough liquids, to do his exercises, to change his clothes,  to give up his car and driving, to switch to a different type of underwear, to use his walker, to accept help.  So in a way, I didn't mind being called Mother Superior, because the things I kept on him about were so he could maintain and stay as well as possible through this disease.

Both my parents had Alzheimer's, so I do live with the thought of possibly developing it, as well.  I don't think too much about it.  I'm trying to get my house in order so my daughter doesn't have to deal with more.  I have long-term care plan that will hopefully help.  I've told my daughter that should I get this disease, if I say anything mean, just know that in my heart I don't mean it and that I love her always no matter what decisions she makes on my behalf.

Yes, I have mentioned the plucking to her, must maintain dignity, that's what I did with my mother and father, not plucking, but made sure they were clean and wore clean and comfortable clothing, and I cut both of the hair (I'm not a haircutter, but I did my best).  I always remembered who they were before the disease and did my best to be respectful to them during the most challenging times of the lives.

My one request to my daughter was don't dress me in pink.

 



Underwear
Posted: Thursday, February 15, 2018 4:18 AM
Joined: 2/14/2018
Posts: 2


So sorry for your loss and sorry you didn’t receive the sympathy and understanding you deserve.
 
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