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What have we gained?
Posted: Friday, January 1, 2016 2:27 PM
Joined: 10/6/2012
Posts: 924

Rio75 made a very significant point in a different post, so I wanted to start a new thread.  The point was that our journey with our loved one and their Alzheimer's diagnosis should be worth something.  

I would hate to think that the only thing that I gained out of this long journey was being so horribly hurt for years and years and losing my Dickson.  I hope that I did the best that was humanely possible to help my husband through the disease and to transition to his new life.  I hope that I've become more patient and kind to others.  I hope that it deepened the relationship with my daughter.  I hope that it showed her about the true meaning of love and commitment.  I hope that it deepened my spirituality and that I can be a role model to others.  I hope that I can share the tiny bit of wisdom that I've gained over this time so that I can share it with others to lessen their load just a little.  I hope that it showed my daughter that as human beings we are very resilient and that she'll manage through any struggle that comes her way.  And I hope that my experience shows others that we can only get along in life when we are kind to each other.

Has this journey with Alzheimer's and the loss of your loved one been worth something to you?

Hugs, Debra.

A losing hand.
Posted: Friday, January 1, 2016 5:38 PM
Joined: 1/16/2013
Posts: 360


 My answer to your question is NO.

 All got out of it is a lot of hurt and pain.  About the only thing I'm happy about is that I was able to take care of her for almost 9 years and I didn't have to put her in a nursing home or get someone else. I did have Hospice help me the last 22months.

 I'm glad that you got something good out of it.  

 Good luck.

Posted: Friday, January 1, 2016 10:12 PM
Joined: 12/16/2013
Posts: 352


I agree with just about everything you wrote. I still hurt. I still feel the need to fill the void of losing my wife. I do believe that there is a reason for the agony we (caregivers and love ones) went through. I don't know exactly what; maybe a way to sanctify our souls? Debra, maybe your correct in saying that it may deepen our relationships with family. I feel that our relationship showed unconditional love. I had a nurse at the hospital Kathy was at thank me for "proving that unconditional love does exist and not just in movies and books." So maybe we can pay it forward. Maybe we will be more compassionate with others. I've posted before that this disease took my wife and I won't let it take me. One way that I'm trying to do that is by trying to be positive. My Kathy deserves that much from me for all her suffering. I owe her that. I don't like the hand that we were dealt but I have to play it out to the best of my ability.


Posted: Saturday, January 2, 2016 9:56 AM
Joined: 12/4/2011
Posts: 19546

I learned about love.
Posted: Saturday, January 2, 2016 11:05 AM
Joined: 2/20/2014
Posts: 294

I'll add to my post, I'm sure. Thanks for this topic

I learned about forgiveness and unconditional love.

Accepting people as they are

Advocacy and empathy 

I am now learning about self care, mindfulness, self advocacy

Lesley Jean
Posted: Saturday, January 2, 2016 11:49 PM
Joined: 2/13/2013
Posts: 2965

Maybe it is too see to see positive outcomes for me. Instead, I feel loneliness like I never have before, learning to live with a broken heart, as someone who planned, i,feel I really have no desire to plan. It is difficult to get up in the morning and face the world. I have learned to swallow my tears back so I don't cry as much as I used to or want or need to. 

Perhaps, the only things I have learned is how to fight for my husband's rights with the VA. 

Family and friends tell me that I am an example to them. But, I don't feel that I was as understanding, patient and at times as loving as I should have been. I regret that and it hurts me. I miss him and if I could do it again I wouldn't have gotten upset when he did things like put groceries back in the car after I carried them out. Or unfolded clothes when I just folded them. Looking back, I wish I would have laughed and hugged him instead of getting upset. 

It has only been two months. I pray time will heal my heart.


Posted: Thursday, January 7, 2016 9:13 AM
Joined: 12/16/2011
Posts: 204

socwkr wrote:

Has this journey with Alzheimer's and the loss of your loved one been worth something to you?

Hugs, Debra.

Debra, absolutely!!  I have learned exactly what "compassionate and unconditional" really mean. While I wish my mum could have lived out her last years dementia free, I will be eternally grateful that I was able to be her caregiver through it all. Of course there were many days when I wished that I did not have to deal with the many faces of dementia which presented during our journey . I am sure that is a given for so many of us here. But I have chosen to find some positive in this journey my mum and I traveled. 

  I  recognize that through out this journey with Mum, we encountered some amazing individuals whom we would not have encountered if not for Mum's diagnosis. Yes, we also encountered those "less than stellar" souls but they were really not the norm and I am trying to emulate those amazingly compassionate people in MY encounters with others who are facing difficulty and who may not be at their best.

My young grandchildren were often here visiting and I hope they retain throughout their lives the unjudgmental and "matter of fact"  attitude they displayed whilst they interacted with my mum during all the stages of dementia they witnessed.



Posted: Friday, January 8, 2016 4:45 PM
Joined: 9/8/2014
Posts: 82

Thank you for starting this thread Debra.  

I am grateful for all of the wonderful people we (my mom, sister, and I) met throughout this journey.  Some of them we knew before mom's diagnosis but many of them we met because of her diagnosis.  Especially towards the end, after hospice was on board, I was so impressed by the kindness shown to us by so many.  I learned there are thoughtful and kind people all around us.

I learned how it feels to truly love someone.  Although my mom and I always had a good relationship and I always knew I loved her, the disease challenged my ability to be around her at times.  However, I always was a strong advocate for her and put her needs first.  Providing care for someone who no longer knows who you are will challenge even the strongest person.  The cost of loving someone so much is the pain we all feel after the loss but I feel so fortunate to have hit the "mom jackpot".  I feel Alzheimer's cheated me out of and adult relationship with my mom but I wouldn't trade her as my mom for anything.

I gained patience, compassion, and a desire to help others that I don't think I would have without the experience.

Sea Field
Posted: Friday, January 8, 2016 7:47 PM
Joined: 8/5/2012
Posts: 1872

What have we gained?

I have gained my own respect.  I learned I can go the distance.

I learned that even when I was exhausted beyond the point of tears, I could get up one more time to help my husband.

I learned that even when no one was looking and no one would know how I responded, I could be patient and kind.

I learned how to ask for help.

I saw the best in others as they shoveled my sidewalk, offered a free haircut or massage, brought over a cooked meal.

I saw the beauty in my son as he fed his father, learned how to change his diapers - all with compassion and respect.

I learned the world didn't end even though it seemed as if my world had.

I learned to speak softly even when my own fears were screaming.

I learned to be quick in an emergency, creative in trying circumstances.   To see humor in many a ridiculous moment.

I learned peace and gentleness are far more valuable than status or riches.

I am deeper now.  Softer, more compassionate.  And a little more broken - my heart cracked open when my beautiful beloved left this earth.

I like who I am now far more than who I was before dementia ruthlessly eviscerated our lives.

Basically, as Judith said, I learned about love.

Blessings, Cynthia


His Daughter
Posted: Tuesday, January 19, 2016 10:34 PM
Joined: 6/25/2014
Posts: 2270


I've looked at this post several times, wondering if I could offer anything.  It's also a question I thought a lot about through the course of this disease process.  It was almost as though I wanted something to be good or right about it all, so looking for a bright spot meant that Dad's illness held some meaning.  You know, that saying we are all told that "we are given experiences in life because there is something we need to learn."    

Honestly, I never did figure it out.  I never felt that I needed to learn compassion, commitment, or that I could handle the long hall.  I knew that from other experiences I'd already had in my life.   I already knew my own personality and that I wouldn't give up or run.

So while I want to give you something profound, honestly I can't.  The only thing that I guess I learned is that some people get Alzheimer's disease and they need our help.   Oh ya, and also that this disease is simply God awful.     


Posted: Wednesday, January 20, 2016 11:38 AM
Joined: 10/5/2013
Posts: 45

This is a really thoughtful topic and some really great answers.  I have to say though, I fall on the side of I don't feel like I've gained  much of anything.  I might be jaded right now as it's a really bad time, but overall I feel like I've only gained a lot of pain and heartache.

This disease is terrible, it has robbed my mom of her happiness, her independence, her memories and ability to function.  It's robbed me of a happy marriage (at least lately) and made me frustrated, angry and impatient with someone who has no control over her actions.

In some ways, I was more compassionate and caring earlier in my mom's life; over the course of time, I've been worn down.  I try hard, but I'm just not as strong or compassionate as many of the people I read about on this board.  God bless you all, truly; that you can be so optimistic and big hearted in the face of this.  I just can't be.

I've also gained a new fear that what if I'm like this in the future?  I don't want my wife to go through this again with me.  I will worry the rest of my life that as 'senior moments' happen, what if it's more?  How do I plan to not have her face this again with me?

One thing I have gained is an appreciation for anyone who is a caregiver,  It is hard, and draining.  Caregivers who face this, especially those of you that remain optimistic and upbeat are truly saints.

Posted: Wednesday, January 20, 2016 9:20 PM
Joined: 1/18/2016
Posts: 19

Your experience is a blessing in and of itself . Thank you, you give me hope.
Posted: Thursday, January 21, 2016 10:01 AM
Joined: 3/19/2013
Posts: 1118

What have I gained from this experience? I guess I'd call it the opportunity for payback.

I also hit the Mom Jackpot in life. My Mom spent 11 years trying to have a child, & endured half a dozen miscarriages before having me. A month before I was due, she was broadsided & her only concern was me. I was truly blessed to have a mother who wanted me so badly, & cherished me every single day! Even though she had a demanding career, she was always there for me, & we were each others' best friend, cheerleader & confidante. She truly went above & beyond, & it was an honor to be able to return the favor. Big hugs, Twink

Posted: Thursday, February 4, 2016 7:19 PM
Joined: 7/30/2015
Posts: 82

I've been thinking about your question since you posted. Beyond the deep sorrow and horror of the journey, it has been a profound, life-changing experience for me. It changed my perspective of what's important and how I want to spend my precious remaining time. It taught me to appreciate brief moments and truly live in those moments. And it confirmed my sense of a vast existence 'way beyond what I can currently comprehend.

I don't want to go through it again, but I'll carry the gifts forward.