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Keeping love alive
JDancer
Posted: Sunday, August 16, 2020 1:01 PM
Joined: 8/1/2020
Posts: 52


I am new to this forum and feel so blessed to have found it. I am moved by the amount of kindness, empathy and good information it contains. I am trying to find more of that kindness within myself and, with it, more love for my spouse. As dementia robs him of  everything, it is taking away the man I love(d). It's hard to love someone who isn't there. I am reaching out to all of you for help. How do you do it?
Ed1937
Posted: Sunday, August 16, 2020 1:13 PM
Joined: 4/2/2018
Posts: 3682


For us, it's a two way street. When she stops loving me, I'll likely be asking that question myself.
vernh
Posted: Sunday, August 16, 2020 1:47 PM
Joined: 7/22/2020
Posts: 51


I have a prayer:

Help me, Father.  Help me to love this woman more today than I loved her yesterday.  Help me to love her even more tomorrow.

Help me, Father.  Help me to grow and increase my love for her day by day, every day as long as I live.

Help me, Father, to be kinder, stronger, gentler.  To be more patient and understanding and loving, day by day, every day as long as I live.

Help me, Father, to be a better man for her sake.

I have learned there is nothing I can do that will change my wife.  The only things that work are the things that work on me.  I have to change myself for her sake.


Joe C.
Posted: Sunday, August 16, 2020 2:48 PM
Joined: 10/13/2019
Posts: 477


JDancer, To me this is the most difficult aspect of this journey, slowly losing a loving spouse. Last Thursday was our 31st wedding anniversary and DW how no clue what the card, flowers or the day were all about, even after showing her wedding picture. It leave my very sad and feeling very lonely. As to the question about how we do it, for me I allowed my love to morph from that of a husband to a wife to that of a parent to a child. I still love her, it’s just a different form of love.
Wish2Roam
Posted: Sunday, August 16, 2020 3:40 PM
Joined: 2/16/2018
Posts: 299


JDancer, like Joe C., I think my love for DH lives on; but it is no longer a romantic, husband/wife kind of love.  DH tells me he doesn't love me, never has, and has never been married (despite a 48-yr marriage).  My love for him is now more in the form of what I would imagine a parent/child love would be.  I make sure he has everything...safety, food, snacks, clean clothes, medicine, remind him to take a shower, change clothes, brush his teeth, change the batteries in the TV remote......In his world, I'm the Housekeeper.  He has absolutely no memory of our life together as husband and wife.  So, I just feed the relationship as I think he sees it.  So far, so good..........but, I hope it's a short journey to the end.

 


Jo C.
Posted: Sunday, August 16, 2020 3:47 PM
Joined: 12/9/2011
Posts: 11420


I so remember being told something that resonated with me, but was not always easiy done:

"Love him/her for who he/she is right now; not for who you want him/her to be."

It becomes as some have already stated, a different sort of love from what once was.

J.


Bholmes
Posted: Sunday, August 16, 2020 9:41 PM
Joined: 2/24/2020
Posts: 148


I understand, I yelled at my DW today over something stupid. She pulled a plate off the table, I cleaned up the mess and then gave her a cookie and she just crushed it in her hand and all over the floor. I just lost it and just had to go into another room and away. I have no excuse other then the days here have been over 110 and stuck inside and I have watched her decline some the last 3 months and feel so helpless as I lose more of her. I truly hate this disease and what it has done to my DW and our life.
Michael J
Posted: Sunday, August 16, 2020 10:06 PM
Joined: 2/19/2020
Posts: 13


My wife has mild ALZ. We still have a loving relationship, but it is changing. Because I am slowly taking on more of the responsibilities and she does an increasing number of things that frustrate me I am having to be more compassionate, but still as a husband. I take this journey one day at a time and try to adjust as needed. At times, especially when I feel like I am doing most of the work in the house I stop myself from getting angry and think through the list of things that my wife still does. That makes me realize that she is trying to contribute as best as she can. I don't know if I will eventually love her as an adult "child" or still as a caregiver husband. In either case, whether I am feeling spousal or parental love it is till love.

I don't think too far ahead. I read how ALZ can turn a person into a petulant child and I hope I am prepared for that if that happens. I do know that taking breaks from caregiving (or from being together 24 hours a day in any marriage!) is very important and certainly hope that COVID-19 is behind us when I can no longer leave my wife alone.

We met with an attorney referred by the National Elder Law Foundation (https://nelf.org/default.aspx). She is putting all of our legal strategies into place for the eventual need to apply for Medicaid. This has taken a huge burden off of my shoulders. One thing we discussed is, if my wife no longer recognizes me what are the options for divorce. I am 67 and healthy so I can imagine that down the road this may be an issue. My wife wants me to find someone and have a happy life, as long as I visit and watch out for her. I don't know if this is for everyone, but having the option gives us comfort.

Be kind to yourself.


Jeff86
Posted: Sunday, August 16, 2020 11:04 PM
Joined: 10/24/2019
Posts: 362


You’re 1000% correct that it’s hard to sustain the love when the LO is so changed, so absent.

This morning, I asked my DW what my name is.  She smiled and said, “Him.”

But with all the loss, I’m one of the lucky ones.  Even if my DW doesn’t know my name, or at times that I’m her husband, she is mostly loving and warm.  So I try to respond to that, and not focus on what’s gone and never coming back.  I try to focus on the things she still likes and can do, and not what no longer holds her interest or is beyond her capacity.

As Joe noted, these are vastly changed relationships.  When I dress or undress her, when I tidy her up after an ‘accident,’ when I grind up her medicine and stir it through yogurt, I am reminded that my DW has regressed, to the equivalent of a child under four years of age.

This disease is relentless.  We can’t let it rub out the kindness and love we need to preserve to be the best caregivers we can be.


Satcmo
Posted: Sunday, August 16, 2020 11:13 PM
Joined: 8/3/2019
Posts: 46


I admire your prayer vernh very

much. What we decide regarding

our spouse's care will have a

weighted effect for the rest of our

life but with that said our choices

can not be judged by anyone but

ourselves. God help me be right

on my decision


Stuck in the middle
Posted: Monday, August 17, 2020 12:27 PM
Joined: 6/4/2017
Posts: 884


JDancer wrote:
I am trying to find more of that kindness within myself and, with it, more love for my spouse. As dementia robs him of  everything, it is taking away the man I love(d). It's hard to love someone who isn't there. 
I would suggest that you not agonize over it.  I don't think you can sustain love if it isn't a two way street.  You still love the person you married, but the person you are caring for is not that person, and there is nothing to be gained by hurting yourself pretending he is.  

I love the mother who bore me, raised me, and loved me for 70 years, not the woman who no longer knew or liked me at the end.  I think of them as two different people with the same name.

Warm yourself with the memory of the person you loved as if he had died, and care for the person to whom you are now married as if it was a job of work that you took on and intend to finish.  Be kind, because you are a kind person.  Give him the best care you can, because you do the job with a craftsman's ethic ("The best that I can do").  When the job is done, move on.

I realize I am suggesting you emotionally distance yourself from your spouse.  Sometimes we have to do things we don't want to do, to protect ourselves enough to be able to do what we have to do.  It is the emotional equivalent of a firefighter suiting up before he enters a burning building.


Crushed
Posted: Monday, August 17, 2020 1:51 PM
Joined: 2/2/2014
Posts: 6105


Its funny.  Love is not something I have trouble with.   What is hard is that it is no longer partnership/spousal love.  The woman I married is simply not there anymore.  But the shell left behind is worthy of love and care and affection.  Its all one way, you don't really get anything back.  But I know she likes the cake and cookies and milkshakes and brownies I bring.  And I know I cannot see her without remembering a lifetime of incredible good times.  We had very demanding careers, and were also  very focused on our children.  We took them everywhere.  And they are very close to me now.

So love is still there, its just not the same. 

 

 


Denny1
Posted: Monday, August 17, 2020 2:49 PM
Joined: 8/7/2020
Posts: 15


For me it's when I see the vulnerability in his eyes, the hunched posture the clenched hands.  I can see his fear, the anxiety.  I have become very protective.  So very different from the start of this journey when I did not understand what was happening and interpreted his strange and unreasonable behaviour as the end of our marriage.  It took a long time to understand the illness. I imagine his brain becoming a tangled web of wires, electricity shortcutting, something came and took it away.  It's lonely but the initial spark of love is still there - somehow - which gives me hope because it means that it was real spousal love.  I've had great difficulty in my caring duties and this made me wonder whether I actually ever loved him, but then something may happen, however small that reminds me of that spark.
Wyoaviator
Posted: Saturday, August 22, 2020 3:59 PM
Joined: 8/7/2020
Posts: 68


<<So very different from the start of this journey when I did not understand what was happening and interpreted his strange and unreasonable behaviour as the end of our marriage.>>

 

 I just got home from a window visit with my wife who is in AL. OH how I can relate! Last year we discussed divorce. Now I realize that I wanted a divorce from the disease.

I now know (from this board) that my wife left a few years ago. I am now left with this terrible, hurtful comment that is seared into her mind.

If only I had known about this message board then!

 


Dreamer Lost
Posted: Wednesday, November 25, 2020 10:35 AM
Joined: 3/7/2019
Posts: 570


I remember --- I remember all the many years we have had together, all of the presents he has given me, all the things he has done for me, all the smiles and laughs he has given me.  I am one of the lucky ones, in that I have had over 38 years with the love of my life, who has made me a better person.  We may no longer have a romantic love and he may yell and curse a few times a day, but for the most part he is a fairly easy person to care for (stage 7, double incontinence) and to love.  He yells and curses at night when I have to get him to lay down in bed (he doesn't understand how to lay down now, so I have to push him and he feels like he is falling).  Three seconds after he lays down though, he will give me a kiss and sometimes says he loves me or thank you. 
  I remember for him. 

Jeff86
Posted: Thursday, November 26, 2020 8:42 AM
Joined: 10/24/2019
Posts: 362


That’s beautifully said, Dreamer.  

My DW is fairly easy to care for—accepting, even wanting help, loving/affectionate still, ravaged but still beautiful.  And it’s easier in some ways for those of us fortunate enough to have had good/happy marriages.  I can recall thousands of small, kind acts, a generous heart, a quick wit and a keen intelligence, wonderful travels and adventures.  (Of course, the loss of these things is that much more painful.). 

I also know that if our situation were reversed my DW would be the most loving and kindest caregiver.  So I aspire to be that, for her.

And so I remember, for both of us.


M1
Posted: Thursday, November 26, 2020 9:11 AM
Joined: 8/22/2020
Posts: 632


Agree Jeff, having had a happy partnership makes it much, much easier to do what you have to do.  We were talking this morning about past Thanksgivings and it breaks my heart that she doesn't remember those past holidays or the folks we used to share them with.   A lonesome day today.  But we're safe and not wanting for much else.  Gotta be enough for now.