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wish more people came here
acb10
Posted: Sunday, June 19, 2016 1:23 PM
Joined: 5/31/2014
Posts: 124


I'm disappointed that more people aren't here.  So many caregivers for so many months sharing, laughing, crying, advising on the caregiver board and it seems, when our LO is gone, so are these caregivers.  Let's please try to encourage people to come here - We need caring and we need one another after our LO's are gone.  I'm going to monthly bereavement meetings but I think I would get more out of it if it were us helping each other.  I'm also disappointed that this particular section of the message boards is so far down on the list and have to scroll down to find it - like it isn't important.

Do any of you agree with me or is it just how I feel right now, 2 1/2 months after losing my mother.

 

april

 


His Daughter
Posted: Sunday, June 19, 2016 3:14 PM
Joined: 6/25/2014
Posts: 2270


April,

 I think there are many reasons that people aren't here.  I remember not even wanting to post on this board, because it meant my dad was gone, and I was no longer his caregiver.   I didn't want to be here, and even to this day I still want to be on the caregiver forum.  

For some of us it has been such a long journey.  We have often grieved for so many years, cried so many tears, and by it's bitter end we are literally praying for their death.  I know I was.  

But I do understand your need for support, and your desire to provide and receive help from those of us who went through this experience TOGETHER.   That's what these boards are all about.   
So post away!!!  There are still some of us here, ready to listen, share, and help each other through this difficult time.   

Veterans kid
Posted: Sunday, June 19, 2016 5:59 PM
Joined: 10/17/2014
Posts: 1239


  Absolutely we still need each other! I've noticed that too, but I also can understand that it can hurt-like Gail said, Meaning her dad is really gone.

 But we definitely need to support each other here-so don't stop posting. It almost seems weekly if not more often  that one of our members is losing their loved one. Maybe it's just me but it definitely seems like the holidays last year through now have been full of them. I know that we get busy and we try to find ourselves,  as we grieve and to try and move forward. I know I've had a lot to clean out-and I'm not done yet

It's not just you feeling that way-and 2 1/2 months is not very long at all.

 Today is my first Father's Day without my dad and also my mom would've turned 85 today-so the double whammy .  But I'm trying to remember the good things and I know that they both want me to be happy and move forward even though I'm shuffling my feet and feels like I'm not going anywhere. Things of changed completely for me being an orphan, The MIA family members, etc. and just trying to find a purpose now. 

I believe even more so that we need each other now more than ever! 

Sending you an endless supply of hugs and pop tarts  

Julie

Always be VK


Lesley Jean
Posted: Sunday, June 19, 2016 11:07 PM
Joined: 2/13/2013
Posts: 2965


I have felt disappointed in how few people come to this board and the infrequency that those who do, come. I too, feel like we are put down at the bottom of the the boards, like we don't really count.  But, I am at fault, too. Coming here opens up my wounds that are just beginning to heal. Visiting this board and reading the others makes me relive the hurt of watching the love of my life slowly slip away from me. I have found that swimming, walking, bike riding and line dancing is more beneficial to me than the group counseling that I was attending. I am. Trying to find myself in a world that is made for couples. It s difficult when you are alone. 

Hugs, 

LJ


Ukie
Posted: Monday, June 20, 2016 7:53 AM
Joined: 12/16/2013
Posts: 352


Tomorrow will be 7 months since my wife, Kathy, passed away. I thought that time would soften my grief but it hasn't. The caregiver board was very helpful. I now don't post very often. Most times I think, why post I really don't know what to say or how to express my feelings. I agree that we are down at the bottom but also wonder why there isn't a chat room for caregivers who lost a love one. I was on the chat room for caregivers every night and made some friends and I feel that we were supportive and helpful for each other. I no longer go to the chat room. I feel that what we shared and had in common is gone but that is on me not them. Wishing everyone the best!
anib
Posted: Tuesday, June 21, 2016 8:27 AM
Joined: 7/29/2014
Posts: 217


Hi All,

Frankly after my mom passed, I was so damn tired and empty I had nothing to share with anyone about anything.

It totally amazed me how people were now popping out of the woodwork to tell me how sorry they were.  Maybe it was just plain anger, cause that was all I had left inside, but where were they when I needed some support? Well, that passed, and now I just feel sorry for them that they missed out.

I was so busy with demanding siblings getting the Trust done, then my brother died, and my long time companion who had stuck by me through thick and thin, always a head on my knee when I would cry, had to be put down. I thought the nightmare would never end. I came home to my own house to find my sheds devoid of all tools, windows broken out in my house. I found it so very hard to have a purpose again, after being at my mom's beck and call for so long. (of which I have ZERO regrets).

My friend Gail reminded me that others may need some advice, at times I am not very tactful, so now I try and choose my words very carefully knowing what we say can really effect someones day that is trying so hard to do the best for their LO's.

Sadly this disease is like a giant revolving door that never stops, some get off and others are stuck in there for years.

This being an "orphan" never really hit me till someone brought it up, but the ruts in the road are slowly smoothing out.  I needed new life in my life, so got me two beautiful lab pups, and they have helped me out with laughing once again (used to be my favorite thing in the world to do) I have learned to smile again..a REAL one not just a face I used to wear.

I miss my mom, an hour before she slipped into that everlasting coma, she looked at me and "said "it is time for me to go".  I know she is with my dad, and at peace.

This has taken such a toll on us, mentally as well as physically.  We hold in our hearts memories that are our own.  I wish you ALL peace.

Ann


KML
Posted: Wednesday, June 22, 2016 12:06 PM
Joined: 11/30/2011
Posts: 2105


Four years last month since my dad died from AD, 16 years since my mom died from AD.  I still come here and to the Caregiver Forum.  If I think I can offer something helpful to someone, I'll post.  I check almost everyday the boards still.  I guess at times I've had to take a break lately, some posts have been sort of hostile on the Caregiver Forum and becomes disheartening for me to read.

Grief, I have learned is an ongoing process.  It's intense in the beginning and somewhat softens in time, but rears up again especially around special occasions, birthdays, holidays, seeing something that reminds you of the person or can just come on out of nowhere.  I still grieve, I still miss my parents and I know I always will, there's definitely two empty spots in my life.  As long I can remember them, they are with me and that brings some comfort.  We were lucky, weren't we?  To have these people we loved in our lives for awhile, while they were passing through?  That's comforting, too, to me.  While we miss them terribly, no one and nothing lasts forever in the physical sense.  But they do stay in our hearts and we learn to appreciate that.  We'll never get entirely used to missing them, we are human, but they left on imprint on us and that will stay.


susanz
Posted: Monday, June 27, 2016 8:36 AM
Joined: 5/14/2013
Posts: 451


April - I didn't realize this board was even here until another member told me about it. I am glad it is. My mom just passed away last week and I think I'm still in shock about the entire thing. Even though we all knew it was inevitable, it still sucks when it happens. This week dad asked me and sis to start helping him clean out mom's stuff - I think that will be very difficult and I am dreading it, but I know it has to be done.
acb10
Posted: Tuesday, June 28, 2016 9:38 AM
Joined: 5/31/2014
Posts: 124


Susanz - I'm so sorry for your loss, it isn't easy.  My mother passed away nearly 3 months ago.  I have done a few things in her apartment (she lived on the first floor, I on the second floor of a two family house) but there is a lot to do and I'm really not in the mood yet.  There is no rush and it will be easier if I have some close people to help me.

Please come back to this board, I'm going to monthly bereavement meetings but the friends on this board have all shared the same experiences of taking care of a loved one with alzheimers.  Together, we can help each other in our grief.

april


Nanateach
Posted: Wednesday, June 29, 2016 5:02 PM
Joined: 12/2/2014
Posts: 121


I wish more people came to this site as well.  I have relied so heavily on the support I have gotten from these boards since December 2014 when I joined.  I have gotten advice, ideas about caregiving, and truly feel I have friends who are compassionate about the role of a caregiver.  Once my husband died, June 13th, it was just so strange to think that I no longer need any more advice or ideas about being a caregiver; however, I sure can use some ideas on how to get on with my life once the love of my life is gone.
farawaydaughter
Posted: Wednesday, June 29, 2016 5:58 PM
Joined: 4/19/2012
Posts: 414


I joined this area 4 years ago. It is just a slow board for a wide variety of reasons. I made friends with a few and we emailed each other. Plus there had been a wave of deaths so this board was more active as there were many of us.

I also got a real life grief counselor for one on ones, that helped a lot. In fact I still see her once a month, 4 years ongoing.

I rarely come here now. I know your immediate pain, I remember though I'd rather not.

I hope you can make some friends here who have had recent losses like yourself. It helps to connect to those that are in the same time period as yourself.

When my grief was new, I found doing things to honor my parents comforting. Wreaths on their graves for xmas, valentines, cards and flowers for their bdays and mothers day, etc....4 years later I find just saying things to them in my mind is enough on the day "of".

Just remember grief is different for everyone and yes sometimes it is just a lonely place that you endure.

 


jfkoc
Posted: Wednesday, June 29, 2016 6:36 PM
Joined: 12/4/2011
Posts: 19631


Susanz....I am glad you found us here. 

I have come to really believe that my grief is mine and to thank others for their suggestions etc.

Example...I have barely touched my husband's things. As a matter of fact I have put certain things, like his flight jacket, where I can touch it as I pass by. 

I hope it will make things easier to take care of your mother's things. You will have time to share memories, shed a few tears and laughs and  hug one another.


Because she's my mom!
Posted: Friday, July 8, 2016 1:33 AM
Joined: 12/15/2011
Posts: 737


I'm afraid I am one of those who don't come here very often. Selfishly, I guess, because I find it makes me sad. I was a member of the caregivers' message board since November, 2006 and found so much support, and tried to offer support to others. I do visit now and then, to see if I can offer some support for others who have found their way to the message boards. Sometimes this board, sometimes the caregivers board. It will be a year on July 20th since mom passed, and I still miss her and cry when I think about all she went through for those 12 long years.

I'm just getting to the point where I can remember what she was like before Alzheimer's.


canuck
Posted: Friday, July 8, 2016 10:56 PM
Joined: 7/30/2015
Posts: 82


April - like the others, I'm still here, but not as often. Your message reminded me that we still have something to offer, helping each other on this next stage.

The best suggestion I can offer is to be good to yourself. AD takes a huge toll, so you're likely exhausted - physically, emotionally, professionally, socially, financially, spiritually. If you give yourself some space, time and attention, you'll be much better-prepared for whatever tasks still await. Ignore the 'shoulds' and do what works for you, at your own pace.

And remember you're not alone.


MilsopT
Posted: Wednesday, July 27, 2016 2:31 PM
Joined: 12/27/2011
Posts: 49


It has been a year and a half since my Mom passed.  I can say for me, I have been hiding from my grief,  Just recently allowing my self to feel it a little at a time.  I have lost myself during my Mom's illness and death.  I am lucky enough to have a wonderful husband who has supported me throughout this painful journey.  I have a sibling who did zero to help me with our Mother.  She could not run way fast enough.  She got involved only at the end of Mom's life by sending the Sheriff and a social worker to my door.  I used some of my Mom's money for her care.  My sister hired a lawyer and found a home for 100 dollars a day.  I asked her if she had been there and she said no.  She only got involved because of the money.  I was able to get her to realize our Mom had so little time that moving her to a place she didn't know what just mean.  My Mom passed about 5 months later,  I have lost basically my whole life,  I cared for her bout 4 and a half years.  I think just as each of our loved ones illness is unique to them so is how we are able to pick up the pieces after they are gone.
jfkoc
Posted: Wednesday, July 27, 2016 7:49 PM
Joined: 12/4/2011
Posts: 19631


I don't know that we pick up the pieces or simply acknowledge the hole that it there and take baby steps to finding things to be interested in.

I was totally broken when my husband died. I did put my toe in the water and have found that volunteering at our art museum is just the right amount of commitment for me. It also works because no one knew me. I don't know why but this made it easier.

Set a very small goal for yourself.... reading a book you have wanted to or trying a recipe that is a bit challenging. I find it is the accomplishment that helps not the task.


Lorita
Posted: Wednesday, July 27, 2016 9:31 PM
Joined: 12/18/2011
Posts: 12876


 Hi,

Sorry to say but I'm one who is remiss in not coming to or posting on the forum.  Truthfully I forget about it.  It is way down the list- if it was closer to the top more people might post.

Like Judith, I haven't done anything about Charles' closet and it's been over 16 months since I lost him.  I think it would make me feel like I was putting him away.  Maybe with his clothes still hanging I'm pretending.  I don't know.  There's no hurry.  I'll do it someday and if not, so what?


CLM Sisters
Posted: Thursday, July 28, 2016 8:37 PM
Joined: 10/7/2012
Posts: 15


I havent posted a lot on this site, but I know when I have it always made me feel better knowing others were supportive and had encouraging words or just prayers. My Mom passed away on July 8th and even typing this is painful. I think the thought of posting here for the first time was scary because it makes it real.

At the same time my father-in-law is dying, not from Alzheimers but in a similar fashion at home. I cannot bring myself to go see him yet. He may not have much time left but the pain of reliving those last few weeks watching my Mom go is too much right now. My hospice grief councelor said it is OK and not to feel guilty that I cannot support my husband right now in his grief. My husband and his family are understanding. But I know I will go see him this weekend if he is still here. 

When I saw the title of this post "wish more people came here" I thought I could have written that because I always feel better sharing with others who have gone through the same thing. We all understand. So here I have done it - posted in this section that I have dreaded and I too hope that others come here to share.

We all need encouragement, prayers and healing, and to laugh & smile again!

Blessings!

L

 

 


MilsopT
Posted: Friday, July 29, 2016 12:47 PM
Joined: 12/27/2011
Posts: 49


That is kinda what I have been doing.  I feel like I forgot how to be just me.  I had lunch the other day with a friend and it was so nice.  LOL I still have one friend.  I hadn't been here in so long until the other day.  I always got a lot of suport.