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Dead or Alive
Still Waters
Posted: Thursday, May 3, 2012 6:47 PM
Joined: 2/6/2012
Posts: 1092


 

 
Which is worse. Living your life without your parent(s), or living your life watching them suffer?
 

 
Do you feel worse now or better?

 
I realize that the pain is different but I am curious as to which pain is worse. Because I find myself wanting my mother’s suffering to end now. But I wonder, when she is gone if I will wish she was still around for me to hold and kiss and hug. But I am so tired of being exhausted, and depressed, and worried, and sad, and angry and upset and guilt ridden and stressed and overwhelmed. Its been years now and I am worn out. 
 

 


dayn2nite
Posted: Thursday, May 3, 2012 7:21 PM
Joined: 12/18/2011
Posts: 3097


This will sound like a mixed reaction and it is.  I feel SO much better for her, but SO much worse for me.  Visiting her was a big part of my life and that's gone now.  I'm kind of adrift.  At least once a day I will say out loud "I miss you mumma".  And I miss her so much.

 

What she needed is much more important, though.  I'm still relatively new on the grief course, but right now, it's a good thing I have mom's 2 dogs to take care of and they are what gets me up in the mornings.


Mimi S.
Posted: Thursday, May 3, 2012 7:24 PM
Joined: 11/29/2011
Posts: 7028


I think Day2night is on the right track. Once they are at end stage, my prayer is always, Lord please take her. However, when their struggle is over, I thank the Lord. of course we miss them, but not as they were at the end. 

Try writing about the good times. That's what you want to focus on.


Still Waters
Posted: Thursday, May 3, 2012 8:59 PM
Joined: 2/6/2012
Posts: 1092


So suffering is replaced by loneliness. Which feels worse?
dayn2nite
Posted: Thursday, May 3, 2012 10:26 PM
Joined: 12/18/2011
Posts: 3097


Watching your loved one suffer is worse, I think.
Beth in Indiana
Posted: Friday, May 4, 2012 7:10 AM
Joined: 12/21/2011
Posts: 95


Actually, right now, the pain is almost equal.  Grief vs. watching them suffer, which, btw, becomes intertwined with the grief once it's over.  It's complicated.  Slowly, as i move through this journey with grief, I'm beginning to regain my life.  The pain does become less but what I'm finding out is not right away. 

 

We pray for their suffering to end first, then ours...


dayn2nite
Posted: Friday, May 4, 2012 8:19 AM
Joined: 12/18/2011
Posts: 3097


Beth, you're right.  And really, if you ask me at times, my answer could be that my current suffering is worse--because at those times I'm missing her it feels worse than when I was watching her as she was dying.
SadinHeart
Posted: Friday, May 4, 2012 10:49 AM
Joined: 12/15/2011
Posts: 403


 

The pain of not having your LO in your life is always going to be there, but it does not compare to the pain of watching them exist with this horrible disease.

 

 


SadinHeart
Posted: Friday, May 4, 2012 12:16 PM
Joined: 12/15/2011
Posts: 403


Losing my parents is something I expected to happen all my life.

 

I didn't know how and I didn't know when, but I knew for sure it would happen one day.

 

The pain of not having them anymore is there, but then I look back at the wonderful life we had together and all I can do is smile. Lately, I only cry when I think about them with that horrible disease.

 

Thankfully the memories of those last days are starting to fade away, not completely, but at least they are not the first memories that come to mind when I think of them.

 

 

 

 

 

 


Oceanbum
Posted: Friday, May 4, 2012 2:05 PM
Joined: 3/11/2012
Posts: 433


This is a question I ask myself all the time. I hate to see my Mom suffer like this and I want it to end for her. But I can't bear the thought of losing her. It's a double edged sword. My Dad says she doesn't know us but I totally disagree with him. When I walk in the room her face lights up. So I know she knows me. Just the other day I came in and in the faintest little voice she said "I've been looking for you." On days like that I think I can't think for a second of being without her.
SadinHeart
Posted: Friday, May 4, 2012 2:28 PM
Joined: 12/15/2011
Posts: 403


The person is still in there, but their lucid moments are rare. They react to things and faces, but they cannot associate who that person is.

 

Before my dad went into stage 7, my husband and I were watching tv with him and talking about things and he would reply as usual. My husband got up to say goodbye and when he walked away I asked dad who he was and he said "i dont know". That same night he asked me if I was his daughter. My mom always said that he knew who she was but when he called out her name he would be looking at me.

 

My mom would remember my husband's name and when I asked her who I was she would say "his wife". She always said she knew people but she was not able to tell me their names or who they were.

 

Did it matter? not in the least. I knew who they were and that is all that mattered to me.

 

It is very hard to let go, very hard, so it's best to enjoy your LO as long as you have them and take it one day at a time.


dayn2nite
Posted: Friday, May 4, 2012 2:39 PM
Joined: 12/18/2011
Posts: 3097


My mom and I had a very difficult relationship all my life--until dementia came along.  She was not a very demonstrative person--our family did not hug and kiss, we NEVER said "I love you."

 

So really, until I was 45, there was none of that going on.  When she went into the NH, the staff was very huggy and said "I love you" a lot to the residents.  I saw how mom responded to that affection and decided to give it a try.

 

We would spend hours holding hands.  I kissed her and hugged her.  We cuddled up on her bed and talked (well, I talked!).  In her last days, I held her hand every moment and talked for 3 days about old times, asked her to forgive me for anything I ever did or said that hurt her, and told her how much I loved her and was going to miss her.

 

So I can't really say dementia was a totally negative thing--because I healed a lot of our relationship by being able to give her affection and receive it in return.  And sometimes when I think about her I feel like I had just gotten started having a nice relationship with her and it's been snatched away.


SadinHeart
Posted: Friday, May 4, 2012 3:03 PM
Joined: 12/15/2011
Posts: 403


dayn2nite ... my parents were the same. No hugs, no "i love you's", but they were always there for me. No doubt.

 

Mom was never loving to me, she always found a way to criticize me and honestly it made me a thick skin person to the point that I dont really care what other people think about me. Everyone is entitled to their own opinion, but mine comes first.  

 

She would tell me things that if I would have let them get to me I dont know the type of person I would be now. I just brushed it off and still loved her.

 

When mom got older she was always making a mess in her closet and one day I told her that of all people to keep her closet a mess when she was the one that told me that I had to hang all my clothes the right way otherwise I would have bad luck. She looked at me and said "what?". I have never laughed so hard, yet to this day I make sure my clothes are hung the right way. (just in case)  

 

But, unlike you, I did not change our relationship because of dementia, to me that would not be my mom. I was used to her critiques and rough ways of showing her acceptance. I am the youngest of three and only girl and I always knew she preferred my brothers over me, but it really didnt matter, I had my dad all for myself.

 

 

 

 


Still Waters
Posted: Friday, May 4, 2012 8:51 PM
Joined: 2/6/2012
Posts: 1092


the caregivers who have lost someone, is a very vital message board. you guys are the one's who carry us over to the last phase. lead us thru the woods. show us the way out, help us follow the path out of the darkness and into the light. i visit here a lot. thanks for still being here.


Still Waters
Posted: Saturday, May 5, 2012 6:14 AM
Joined: 2/6/2012
Posts: 1092


did any of you feel a great sense of relief? did you feel peacefull in some way?

SadinHeart
Posted: Saturday, May 5, 2012 6:15 AM
Joined: 12/15/2011
Posts: 403


I felt numb.

 

I prayed to God so much to let my parents rest that I thought I would feel relief when it happened, but all I felt was a feeling of numbness.

 

After a while then you start to realize what happened and especially when you come to these boards and read what others are going through which is exactly what my parents went through, that is when I say; Thank you Lord that my parents are no longer living with this horrible disease.

 

 

 


Still Waters
Posted: Saturday, May 5, 2012 6:24 AM
Joined: 2/6/2012
Posts: 1092


i see. so there is no feeling of satisfaction.
SadinHeart
Posted: Saturday, May 5, 2012 6:40 AM
Joined: 12/15/2011
Posts: 403


Still Waters wrote:
i see. so there is no feeling of satisfaction.

 

 

 

 

Well I was satisfied with what I did to help them, but that is something I felt throughout the entire process.
The problem with this disease is that no matter what you do it is never enough to improve the situation. Once your LO is in the last stage you feel helpless.
As you know, it is so stressful that when you get to the end you feel like you hit a brick wall and came to a sudden stop. Maybe that is the numb feeling I was left with.

Still Waters
Posted: Saturday, May 5, 2012 7:11 AM
Joined: 2/6/2012
Posts: 1092


so true. no matter what i do, i never feel like it is enough.

 

i wonder if i will ever feel the satisfaction that my job is done. i did what i had to do and now it is time to think about myself and try to have a life again and be happy.

 

i hope so.


dayn2nite
Posted: Saturday, May 5, 2012 8:06 AM
Joined: 12/18/2011
Posts: 3097


I feel like I took very good care of mom, so I don't feel that is unfinished.  I'm also satisfied she is at peace.  I feel numb and sad, kind of adrift.  I'm just working and not expecting too much of myself right now other than getting through the day.  I felt very okay the first week after, then it seems the reality of how altered my life is now has hit me.  It's okay on days I'm working, but on days I'm off it's worse.
Still Waters
Posted: Saturday, May 5, 2012 8:20 AM
Joined: 2/6/2012
Posts: 1092


i think i am going to feel exactly like you. i am very attached to my mom. we lived together for all of my life.
Beth in Indiana
Posted: Monday, May 7, 2012 7:50 AM
Joined: 12/21/2011
Posts: 95


Ditto - no real sense of relief.  Just - no regrets.  I did all I could.  It wasnt't enough.  She DID suffer and I couldn't change that.  Just the nature of the disease itself made that inevitable.   That was incredibly hard to voice at first.  But you do learn acceptance (or go mad). 

 

In the end, you do the best you can and learn to live with the rest.  I AM glad she's not suffering anymore but it's not the sort of peace I was expecting myself. 


SadinHeart
Posted: Monday, May 7, 2012 8:14 AM
Joined: 12/15/2011
Posts: 403


It is so true. If you don't accept that there is nothing you can do, you can go mad.

 

I was going bonkers trying to get the neurologist to make my dad well again. I called his office every day to tell him that he was still having sundown syndrome. The Dr was great. He knew how to deal with my anxiety and was willing to try different meds, probably knowing that none of them would help, but at least it helped me think that he was doing something.

 

I had a fight with his office one time because I had called and they did not give the Dr my message. The office staff tells me that they understood how I felt, but it sounded so cold. I let her have it. I told her she had no idea what it was like to watch your dad having sundown syndrome and not being able to do anything for him. I felt bad later on and I even caught myself. What am I doing?

 

I read my journal now and I see my subjects "Dad is walking again, thank you Lord!!", "Dad is eating!!!"... etc. Any little positive reaction meant the world to me. At least it was a positive message that dad was not dying, at least not yet.

 

Once I accepted that my father was dying, I felt a peace inside. I was able to just enjoy the time I had him. That's how it was with mom. I was more concentrated on just enjoying time with her and doing things with her. I knew the disease was going to take her, I didnt know it would be so quick, but my mom didnt want to live without my dad or maybe the disease made that choice for her. Either way, I took advantage of every minute she was with us.

 


Beth in Indiana
Posted: Tuesday, May 8, 2012 2:31 PM
Joined: 12/21/2011
Posts: 95


Sadinheart - I am so glad you let the neuro's office have it.  Sometimes people just don't have a clue.  I know everyone has their own burdens, but really, unless you've lived this, you really don't know how bad it can get.  Empathy is one thing, trying to solve the problem, quite another.  Hopefully they learned a lesson here.  I'm not trying to be unkind to the staff, but really, you were looking for answers not necessarily a shoulder to cry on.  At least the neuro got it - God bless him.
SadinHeart
Posted: Wednesday, May 9, 2012 5:52 AM
Joined: 12/15/2011
Posts: 403


I refuse to be a victim. I do not allow uncaring people to treat me that way. If you are working in a customer service job then you have to provide that service.

 

Even in the hospital the nurses didnt understand dad's condition. That is why everytime he was hospitalized I took off work and spent all day in the hospital with him.

 

 

 


OMNI461
Posted: Sunday, May 13, 2012 2:10 PM
Joined: 12/20/2011
Posts: 84


Still Waters--without a doubt it is worse seeing our LO suffer. It is real hard losing our LO and it is a process to work through the grief process (which I still am but getting better I think--Mom passed away 2/1), but the point is you do work through it and move on. And move on in a good way....remembering the good times and good memories, remembering the wisdom shared, remembering and honoring them in your own way. All of this feels good and is positive. It is hard, and I still cry sometimes out of the blue when something reminds me of the loss, but it is far better than seeing her suffer.

 

My mom was just entering stage 6, so she was not "suffering" nearly as bad as stage 7 would have been. But her final illness was miserable (tongue cancer) and I am so grateful she is not suffering from that anymore...and because of AD she did not really know what was happening or that she was going to die when I took her off the breathing machine (she was awake and interacting with us when we stopped treatment).

 

My dad also has AD and is in an ALF. I cherish the time I spend with him (I always have enjoyed spending time with him my whole life). I know that if he lives long enough with this disease he won't be able to interact how he does now. My focus for both my parents were always to keep them safe and happy--and what I was feeling very rarely mattered.

 

Also, something I did not expect when Mom passed way, was I felt like I lost two people at once. I lost my mom to AD and then I lost her when she died. I never had a chance to grieve the loss when she was afflicted with AD...but she was not the person I knew as my mom growing up. That is almost a harder loss to realize than losing her when she ultimately died.