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Remember not just that they died, but that they lived!
dj okay
Posted: Tuesday, July 9, 2013 3:52 PM
Joined: 11/29/2011
Posts: 1840

It was just a short note in the midst of dozens on a sympathy card sent to me by numerous co-workers from a company location out of my state when I lost my father.  I was so moved by all the kind thoughts and expressions of sympathy.  But that one grabbed my attention, "As you grieve your loss, remember not only that he died, but that he lived."


It was months before I could begin to remember my father before he got sick.  I was so filled with grief and memories of his last weeks and days, the hospital, the doctors, the long drive to see him after brain surgery (13-hours, mostly at night), the funeral preparations, staying with my mother after he died, the funeral, the fog of the days afterward and trying to get back into a routine.  But slowly, I began to recall his laugh, his strong hug, his hands when he prayed, the things he made for me when I was little....


After my mother died, I went through much the same grief, except it was more profound as her care had consumed not weeks but years of my life.  After watching her decline into the abyss of dementia, I had a much harder time remembering the woman she used to be.  But after I felt I had worked through the details of her last days and reconciled myself to the fact that I had done everything the way she would have wanted, I began to replace memories of the recent past with memories of happier days gone by. 


She had a good life.  She lived with the first man she married for almost 55 years.  They had a wonderful relationship, many, many friends, and a solid faith that carried them through the hard times.  She had two children who loved her dearly and in-laws who learned to do the same.  She worked hard, played hard, and gave of herself to anyone in need her entire life.  And when she knew she was sick, she faced the end with courage and peace (well, most of the time).


I'm sharing this because I hope that it might help some of you who are struggling with the grief we all understand, that of a loving caregiver who has lost the one they cared for.  It is all too easy to remember how their life ended.  I think they would want us to remember how they lived it.

Little Wing
Posted: Tuesday, July 9, 2013 6:19 PM
Joined: 5/15/2013
Posts: 146

Ah DJokay, what a great last paragraph.


I'm sharing this because I hope that it might help some of you who are struggling with the grief we all understand, that of a loving caregiver who has lost the one they cared for.  It is all too easy to remember how their life ended.  I think they would want us to remember how they lived it.

This last line is SO IMPORTANT.  My mom died less than three weeks ago, and I get those feelings of "something is missing" or "I'm supposed to be doing something" because that's what we did, especially towards the end as things got more difficult.


My mother always told me, pre-dementia and during (when she was lucid) to live my life.  That I didn't need to sit with her 24/7 or call all the time or check up on her.  Of course we do it out of love, but also out of a sense of responsibility.  We have to put ourselves in their shoes, if we were sick or gone - we would want our loved ones to LIVE their lives.  

Just because you're living your life, doesn't mean you've forgotten anyone or anything about them.  I have a poem I've loved since I was young that I read aloud the day my best friend and I scattered my mother's ashes.  I don't know that I ever thought I would need it, but it brought me tremendous solace that day, and continues to when I think of lines from it.  It's below.  I hope this helps someone as well.  Please don't be put off by the title, it sounds a bit uncaring if you're not in the right frame of mind.


Henry Scott Holland - Death Is Nothing at All

All Is Well

Death is nothing at all, 
I have only slipped into the next room 
I am I and you are you 
Whatever we were to each other, that we are still.

Call me by my old familiar name, 
Speak to me in the easy way which you always used 
Put no difference in your tone, 
Wear no forced air of solemnity or sorrow 
Laugh as we always laughed at the little jokes we enjoyed together.

Play, smile, think of me, pray for me. 
Let my name be ever the household world that it always was, 
Let it be spoken without effect, without the trace of shadow on it.

Life means all that it ever meant. 
It is the same as it ever was, there is unbroken continuity. 
Why should I be out of mind because I am out of sight? 
I am waiting for you, for an interval, somewhere very near, Just around the corner. 
All is well.

Posted: Wednesday, July 10, 2013 11:34 PM
Joined: 11/29/2011
Posts: 521

dj okay,


Loved your note and Little Wing your poem is wonderful also.


May the memories of your loved one comfort you as they would have wanted.


God Bless and keep both of you.


I know that my time is coming and I dread it but just know that this thread is here comforts me.  I read from time to time just to keep up with those I care about.


Hugs to you both,


one daughter
Posted: Thursday, July 11, 2013 7:10 PM
Joined: 1/30/2013
Posts: 1980

DJ, absolutely beautiful, thank you for sharing. I just wished I could remember the way my daddy lived. Right now all I can think about is the HELL he went thru w/his dementia. He struggled hard to be as sharp as he was before his dementia. He still could remember most of the presidents of the U.S. Still went to the bank. But he knew he couldn't do what he used to. He passed in March of this year. I miss him so bad.
dj okay
Posted: Friday, July 12, 2013 9:46 AM
Joined: 11/29/2011
Posts: 1840

One daughter,


I'm not sure I was there after only 4 months with either my dad or my mom.  It takes a while before the bad memories are replaced with good ones.  But it is something to aim for.


I know your heart is broken and you have your plate full of taking care of your mother, but try to remember the good times as well as the bad.  It does help.



one daughter
Posted: Saturday, July 13, 2013 12:23 PM
Joined: 1/30/2013
Posts: 1980

Dj, thank you.
Posted: Saturday, July 27, 2013 8:37 PM
Joined: 11/3/2012
Posts: 91

Thank you for posting . My mother passed on April 1 of this year. I am having a hard time with feeling bad for not being nice enough, not being the same daughter I was when Alzheimer's was not in the picture but my mother was not the same person either and it was a very difficult journey to travel. I am hoping that as the months turn into years I will remember the good memories and not the last years of her life and I will forgive myself . I have a knot in my throat just writing this and remembering how it was the last stage of her life. . But I also know that doing this almost alone had a lot to do with how I felt. I felt abandoned by my other siblings and I felt bitter and wish I had not let the illness consume me too!



one daughter
Posted: Friday, August 2, 2013 12:28 AM
Joined: 1/30/2013
Posts: 1980

I snapped @ my mama just yesterday. Of course I caught myself, hugged her, & told her how much I loved her. I too, am the sibling that is there no matter what. We lose our patience. But pleez don't burden yourself so heavily. Thus is the hardest job I've ever had. I did lose my daddy & the times I snapped @ him eats up @ me. May God bless us.
dj okay
Posted: Friday, August 2, 2013 9:02 AM
Joined: 11/29/2011
Posts: 1840

Dear Maral51 and one daughter,


I don't know if this will help you, but please consider doing it as it really helped me a lot after my dad passed away (10 years ago this month).


Write a letter to your loved one that is gone.  Tell them all the things that burden you, all the things you wish you could have told them before they died, all the things you want them to know about how you cared for them during their illness.  Then take the letter outside, light it on fire, and watch as the paper sends your "smoke signal" to the heavens.  You will feel better.  Don't let it eat you up.  You will find this exercise a cleansing of your soul.


Caring for someone with dementia was the hardest thing I had ever done in my life.  Losing her was the next hardest.  I have found with my mother's loss, it is taking more time.   But when I feel the grief or regret or self-recriminations so heavily, I write them down in "letters to Mama".  It really helps to get them down on paper.  By speaking "to her", I can now say all the things I couldn't say when she was living in the fog of dementia.


Blessings to you both and hugs(((((())))))

one daughter
Posted: Saturday, August 3, 2013 10:48 AM
Joined: 1/30/2013
Posts: 1980

dj okay, thank you for sharing about writing a letter to my daddy. I don't know that I could get thru a few sentences, let alone a whole letter without crying & having to stop. Just reading the posts on this board really gets to me. We were supposed to go to the cemetery today. It's an hour and a half drive. Been planning it for 2 weeks. I just told my husband last nite that I'm not ready. I just hate the thought that my daddy's there. I haven't been to the cemetery, since we put him to rest. The one thing that keeps me going is my mama (who has ALZ). I have to take care of her. But she doesn't make it any easier when she asks me "when is he coming home?" Which she's starting to do on a regular basis. It just breaks my heart. And I know it's not her fault.
dj okay
Posted: Saturday, August 3, 2013 11:14 AM
Joined: 11/29/2011
Posts: 1840

Dear one,


I actually couldn't bring myself to do the letter until the 6-month anniversary of my dad's death.  So don't beat yourself up for not being able to bring yourself to do it now.  It's still soon and you were overwhelmed with your mom's care as soon as you lost your daddy.


I don't know if you knew, but my dad died quite unexpectedly, just 5 days after we learned he had a brain tumor.  He was doing well following surgery and the doctors were giving him up to a year.  So we were all blown away when he died suddenly on day 4 post-op.  We all (including his PCP) thought that he was getting Alzheimer's.  He had no pain from the tumor but had started acting really strange.  I was making plans to place him in a nursing home as soon as possible as my mother couldn't care for him any more (he was 6'3" and 220 lbs) since he was having trouble transferring himself at times.  The doctor called me that evening to let me know they were moving him to a hospital in the larger city where the brain surgeons were excellent.  We drove 13 hours through the night to try to get there before they finished surgery (we weren't told he was scheduled until 6 hours before they took him in).  We got there right after the surgeon had spoken to my mother.


My dad had taken care of all the finances and a lot of things around the house, so we were concerned right away about mama taking care of everything.  But I created a budget for her that I thought she could follow and explained how to balance a checkbook, something she had never really done.  As months went by, it became obvious what we were dealing with, but getting her to make changes was next to impossible.


Anyway, I didn't have to step immediately into full-time care of my mother as you had to, so I had a little more freedom to work on my grief.  As a "daddy's girl", I think you understand how profound that can be.  Give yourself more time.  You have a lot on your plate right now.  But continue to do your grief work.  Healing will come in time.


Looking back and knowing what I know now, I recognize changes in my mother for at least a couple years before we lost my dad.  But there were so many health issues with my dad the last couple years he lived, that we attributed most of it to the strain she was under doing most of the work around the house (they owned an acre of land, all of which had to be cared for) and taking care of Daddy.  Despite his failing health though, he was able to keep up with the finances until just a few weeks before he died.  And it was the finances that my mom had the most trouble with and I had to take that over about 1 1/2 years after Daddy died.


I've always felt badly for you since you came on the forum because of all you are dealing with.  I can relate in large part to your grief of losing your dad and all the concerns that come with caregiving for a parent.


I feel like I'm rambling, but I wanted you to know a little more about my story.  Do try and take care of yourself as well as your mother.


Sending a warm hug and hopes for better days((((((()))))))

one daughter
Posted: Saturday, August 3, 2013 6:16 PM
Joined: 1/30/2013
Posts: 1980

 My daddy also passed unexpectedly. His VA nurse, social worker, & counselor were all there to see him @ the same time on a Monday. He was happy, cause he was surrounded by women, haha. Then Thur a.m. I called him @ 9:30 a.m. & he didn't answer. I thought well maybe he's tired & sleeping in. He was my mama's main CG. So I called back @ 10:45, still no answer. I called my husband & told him I was worried. So my husband walked next door to daddy's house. He found my daddy laying on the floor by the front door.How he got there w/out his wheel chair, I'll never know. My husband picked him up & put him on the couch. He was alert & told my husband that he was cold. So my husb wrapped him in his electric blanket & daddy went to sleep. Husb stayed w/daddy & mama till i got there. He even cooked them breakfast. Day couldn't eat. I got home @ lunch & he was still asleep. I woke him & asked if he needed to go to the hospital. He said no & that he was just tired. We didn't have a CG that day. I told daddy I would take mama to my house so he could rest up. I went back to his house (I asked friend to sit w/mama, while I checked on him). He had vomit coming out of the side of his mouth. I said "daddy you gotta sit up". He said he couldn't cause he was too weak. So I lifted him up. Then I called 911. My daddy used to drink alot of Jim Beam & Coke. But in his later years he switched to beer. I thought we were just going to take him to the hospital for fluids. As we had done so many times in the past. From drinking he would become dehydrated & his electrolytes would be low. But not this time, this time I didn't get to bring him home. 

  My mother had always been illiterate. I honestly don't mean that in an ugly way. She's never been able to read or write. At least not in English. She diagnosed w\Alz in 2006. My daddy diagnosed w/dementia in 2010 following a stroke. Altho I paid the bills online for him, he would still go to the bank & make deposits or withdraw money. My daddy also did all the cooking. 

 I take care of mama, but I do have help. I work from 8 a.m. - 3 p.m. Anna I have someone that comes in @ 7 p.m. to stay over 3 nites a wk. So I guess I should suck it up & be thankful. But God knows I miss my daddy & there's a huge hole in my heart

 DJ, thank you so much for listening. I try not to talk to much to my husband, cause he hurts for me. Thank you again.

Posted: Saturday, August 3, 2013 6:41 PM
Joined: 8/28/2012
Posts: 318

I really like the idea of sending mom a "smoke signal" in heaven.  I'd heard of doing something similar, but it was in a different context; I'd never thought about doing that with mom.  It's far too soon for me to do it - she only died 2 days ago - but it's definitely something I'm going to remember for down the road.
one daughter
Posted: Sunday, August 4, 2013 10:49 AM
Joined: 1/30/2013
Posts: 1980


 Tomorrow will be 6 months for me. But it hurts like it was yesterday. Bless you.

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