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They say I did so good, I'm not convinced!
Oneandonly
Posted: Tuesday, December 17, 2013 6:43 PM
Joined: 9/13/2013
Posts: 80


This is my first time to post in this forum.  Can't believe I'm on the 'other side' now.  Mom passed away exactly two weeks ago tonight so this is still pretty new.  I still have to face her memorial service this Sunday.  Cards have been coming in and people are praising me for doing such a good job for my mom, for making sure she had good care.  I just am not so convinced.  Every time now I hear about an elderly person who had surgery for some condition I wonder if maybe that would have helped mom?  Maybe I should have tried that.  The thing is that throughout her journey with AD and her various medical issues that cropped up along the way I was quite confident is my choices.  In the end I really do believ I made the right choices but I just wasn't expecting that now I would spend two days analyzing every
Oneandonly
Posted: Tuesday, December 17, 2013 6:46 PM
Joined: 9/13/2013
Posts: 80


Continued...(sorry I am having trouble editing before posting.  Typed this many times and lost it)....anyways, I didn't expect to be analyzing everything for two days to arrive back at the same point where I started from to be comfortable with my decisions!  Kind of driving me and my poor hubby nuts!
deb97
Posted: Tuesday, December 17, 2013 6:51 PM
Joined: 8/7/2012
Posts: 218


I'm so sorry for your loss.  I do the same thing but I know it's not healthy.  I guess many of us do this.  I think that looking back and replaying decisions is a way of not dealing with the pain of the present. 

 

Again, I'm so sorry for your loss. 

 

Deb


dj okay
Posted: Wednesday, December 18, 2013 8:04 AM
Joined: 11/29/2011
Posts: 1840


Dear oneandonly,

 

I completely understand where you are and what you are feeling.  I, too, felt I made every decision for my mother out of love and respect for her wishes.  But when they are gone, that other voice starts whispering in our ear, "But what if you had done this?"  and "Why did you do that?"  And we are left with self-doubts and endless second-guessing.

 

I can tell you from experience this is not healthy.  I've been there, done that.  And I have learned a lot about myself and the grieving process for a caregiver.  This is not an easy journey and one that many people need help getting through.  The grief of a caregiver takes on an entirely different dimension than that of just losing a loved one that you were not responsible for.  In addition, a dementia patient is not able to (usually) participate in the decisions that must be made on their behalf.  You have already seen how that can cause this second-guessing ourselves after the fact.


Two weeks is still very, very early in the process.  Your feelings right now will likely be all over the board.  That is perfectly normal.  Do not place expectations on yourself or allow others to.  Don't think that "I should be doing better by now" or "By such and such a time, I will be healed of this intense grief."  Every person grieves in a unique way and you are who you are and will grieve your mother in a way completely unique to you.

 

I encourage you to seek support in whatever way works for you.  Since your mother was a hospice patient, they will have grief counselors and grief support groups to help you along on this new journey.  I talked with them a few times during the first few months after my mom passed since they called to see how I was doing.  I always thought I was doing fine so I declined to become involved in a support group (other than this forum which HAS been a great help) and didn't think I needed to speak with a professional counselor since I had good support at home and friends I could share with.  But there came a time when I needed it and they were still there.  I sort of wish I had started earlier, but that's another story.

 

If faith is a part of your life, you may find tremendous support in your religious community or with spiritual leaders.  You may have a friend that is understanding of what you are going through.  You may find strength in times of personal reflection.  But allow that you will need support.

 

I have also learned that grief is not just an emotional journey.  It affects us mentally, physically and spiritually in ways that we don't always see coming.  My body has often been the one to give me those "wake up" calls that I am not doing as well as I THINK I am.   I have often come here to share with others that are on this journey with me.  I have gained strength from their experiences over the past 16 months since my loss.

 

Losing the person that gave us life (either through birth or adoption) is a special loss.  I thought my heart would break when I loss my dad as I was always "Daddy's girl".  But losing my mother has been much harder.  Maybe the fact that very little time went by after my dad's death before I had to assume responsibility for my mother.  I may not have completely grieved his death.  Although he has been gone 10 years, in many ways I am mourning the loss of both of them at the same time.

 

I hope that you will be gentle with yourself during this difficult time.  I am sorry you are here but you are in good company.  You will find this forum a bit less active than the caregivers forum, but give it time.  Others will be along to offer their support.  Read some of the other posts.  I hope you will find some help for your hurting heart.

 

Hugs((((((())))))


KML
Posted: Wednesday, December 18, 2013 11:13 AM
Joined: 11/30/2011
Posts: 2105


It's taken me a long time to grieve and I have done quite a bit of second guessing myself, the decisions I made on behalf of my father and I have ruminated for a long period of time, my father passed away 19 months ago.

 

I have to say that is a normal process of grieving.  Even for myself I was well into almost a year from the time my father passed away that I was still doing this on an everyday basis.  I would say it becomes unhealthy when you become stuck, when words of comfort and guidance do nothing to help you feel better and you remain beating yourself up.  I feel it is very beneficial to talk with a grief counselor as soon as you can, to help sort through these feelings.  This journey certainly has been a roller coaster and so much of the time we didn't have time to gather our thoughts, we were in high alert mode all of the time and when it ended, we feel like we hit a brick wall running at high speed.  Talking with someone who understand will lend a very helpful hand and guidance through this very tough period.

 

But again, to think about what's been lost, the second-guessing, it's the process of absorbing the loss, and everything leading up to it.  This is part of the grieving process.  I think this is perfectly normal and to be expected to some degree.

 

Sometimes we feel ashamed of telling someone how we feel, sometimes we don't think our feelings are normal or that people will judge us and sometimes it's us judging us.  I think you have taken a step towards healing and that is sharing your feelings, your misgivings, your doubts.  We all have these and when we keep that inside, we don't realize that others feel or have felt the same way and we have no way of knowing that it is perfectly normal to feel this way.

 

We need to hear that someone else is or has gone through all the same things and feelings and that they got through it and they began to heal and everything that has happened will have more clarity to it.  That's when we release ourselves from these doubts and second-guessing. 

 

There are very good books are grieving and what struck me was what I was feeling was universal, the books described exactly how I felt and I knew that the book wasn't just written for me, it was written because we all have these thoughts and feelings and to me that was a comfort, knowing it was part of the grieving process and it would pass and soften in time.


dj okay
Posted: Wednesday, December 18, 2013 11:57 AM
Joined: 11/29/2011
Posts: 1840


KML,


Thanks for clarifying my point about second-guessing being unhealthy!  You are absolutely correct.  It is completely normal to go through that process.  What isn't healthy is to continue to beat yourself up for things that were done with the best of intentions.  I guess I split my thought between the two paragraphs.  What isn't healthy is "endless second-guessing".

 

I do think it is good to review everything you did, all the decisions, the moves, the changes made, so that you can look at your caregiving from a healthy perspective, deal with it, and let it go.  Sometimes it will come back, but once you've gone through the review process, you are better able to talk to yourself in a healthy manner rather than harboring regrets forever.


KML
Posted: Wednesday, December 18, 2013 2:39 PM
Joined: 11/30/2011
Posts: 2105


dj:

 

Your message was clear and I agree when it goes on for long period of time and no relief in sight, it is unhealthy and tormenting.  I can remember people telling me I took good care of my dad, but in my heart and head, I kept asking myself over and over what could I have done differently and I would come up with options and feel bad although the "options" were not realistic.  It wasn't until I read a book on grieving, did I come to realize that the second-guessing is part of the grieving process, but I really do agree, sometimes we get stuck there and need someone to help nudge us past that point, because that's a terrible place to be stuck.

 

No worries, your post was very clear, I was just relating my experience with my second-guessings and the difficulty I had coping with it.  The only way I moved past it was talking to others and understanding that part of it.  For me, it took many, many discussions and lot's of reassurance.  It's better, but there are some days it takes hold again, but I am getting better at resolving it.


one daughter
Posted: Thursday, December 19, 2013 10:45 AM
Joined: 1/30/2013
Posts: 1980


I still cannot believe i'm "on the other side".  I lost my daddy in March of this year.  I am still second guessing myself.  When the Dr told me that by removing the bipap mask, my daddy might live 2 hours, a week, a month, she didn't know.  Being daddy's health surrogate, I had to make the call.  They said they were going to move him up to a Hospice floor.  I went outside for just 5 minutes & they called me back in his room.  He was already slipping away.  I had no idea he wouldn't last for more than 5 minutes without that mask.  Now I second guess myself....what if I would have told them to leave it on him????  I could have had more time w/him.  So I truly know the hurt & pain you are going thru.  Just typing this is making me upset again.

 

dj, I was always a "Daddy's Girl" too.  I remember when my mama & daddy would say "well she loves you more"  & the other would say "no she loves you more".  And I would say I love you both the same, unconditionally.  It hurt me so bad when I lost  my daddy.  But like you I had to take over the CG'g role for my mama.  I don't know how to say it, but it's not that I love her more....but I'm with her so much & she has become like a child. She depends on me more than my daddy ever did, even w/his dementia, he was still head strong.  She needs more CG'g than my daddy did. I don't know how I'm going to handle it when I lose her.  There's no one else there.


Oneandonly
Posted: Friday, December 20, 2013 10:44 AM
Joined: 9/13/2013
Posts: 80


I thank each one of your for your thoughtful and detailed responses.  Just reading them makes me feel better.  I must say the last few days has been better.  When those doubts pop in my mind I do a little self talk and stomp them down.  I remind myself that when the end came close, my mom had a very clear moment and she thanked me for all I had done for her.  It is very , very difficult to think about that because of the raw emotion wrapped in those words and what was happening at the time (horrible scene with her in the ER).  But somehow in all her confusion she must have felt my love and had a sense of how difficult the journey had been. for me too.  Such a gracious woman. 

 

So glad I found this board at the end of the summer and that it is still here as I walk this path through the garden of grief.  (oh my, how poetic that sounded - not intended!).

 

Hugs to each one of you for sharing your insights and stories with me.


MLB61
Posted: Saturday, December 21, 2013 2:13 PM
Joined: 12/2/2011
Posts: 726


Your mother was so lucky to have you with her on this long and difficult journey. Please be gentle with yourself.  You did the best that you could.  No one can do more than that.  We all have some doubts...  woulda, coulda, shoulda...  but in the end, we are only human in the face of a really terrible disease. There are no good answers and no good outcomes.  

 

This is all so new to you right now.  Give yourself time to grieve.  It is natural to look back and question, but I hope that, in time, you are comforted by happy memories of your mother.  Sending you my heartfelt condolences and hugs from afar...

 


Stacy T
Posted: Monday, December 30, 2013 11:48 AM
Joined: 10/31/2013
Posts: 20


I too have been doing the woulda, shoulda, coulda's.  What if I had kept her at home, what if I had switched hospices like I wanted to.  What if I had pushed her to eat/drink more.  But you know what, the outcome would have been the same.  I have come to accept that.  Our loved ones were dying, one second at a time.  That we got to be a part of that is a bittersweet blessing.  My mantra is:  mom is at peace and I'm okay.