The hardest part is the emotion

Isac

My husband was diagnosed with MCI in 2017 and has been very functional with daily activities, although some days are better than others. Last night he wanted to know about long distance phone calls. He doesn't remember that we can now make calls within the U.S. as part of our cell plan. When I explained that to him he was very surprised. I don't have a problem answering those types of questions but in private, the anger, sadness, and helplessness that I feel when I can see his decline are overwhelming. I am his only caregiver. Our children live out of state and are willing to help but I don't know how they can being so far away. Both my parents had dementia and I was one of their primary caregivers. Consequently, when my husband was diagnosed, I thought I was prepared. I'm finding that's not the case. I need emotional support more than anything.

Ed1937

Hello Isac, and welcome to the forum. I'm sorry you are finding it so hard. But you're in a good place to get understanding and help whenever you need it. We have people here who have been in every state of this disease, and they are very helpful. So ask questions or just rant. It is all acceptable here.

Marie58

Welcome Isac. You found a good place to learn, vent, share, ask questions, get support and more. 

The emotional pain is real. It's all part of the grieving process, and I understand how it's even harder with your DH vs parents or anyone else. We're losing the love of our life a little at a time. My DH was diagnosed in 2016 and is now late stage 7. I sometimes think I'm out of tears and then the flood gates open. Or the tears are right there, ready to flow with one trigger like a memory or thoughts of the future which isn't to be. I've never been an overly emotional person, but have been on this roller coaster for almost 6 years now and I never know when the emotions will overwhelm me.

Blessings to you and your DH.

Joydean

Isaac, hi. You are so very right, having to watch our love ones decline, having to keep a positive and supportive face on, while on the inside we just want to scream! I thank God for the wonderful people here that are so helpful and supportive. All going through this horrible road. I like to think of this group as the family I never had, a family that never judge’s, always there for each other. And they are your family too.  Hugs!

Buggsroo

Isaac, 

I totally relate to how you are feeling. I had a conversation with my husband who asked me if I had ever been on an airplane before. I said yes and listed the airlines with which I had travelled. He was very surprised. The up part about this is that I can talk about things I have spoken about before and not bore him. The sad part in this is the perpetual Groundhog Day one lives over and over again. I paste a smile on my face, even though inside I am crying.

arizonadianne

((Big hugs)) and welcome. I can start crying easily too. You’re right, it’s the hardest part. The last time it happened (a week ago)  I reached out to family. Nobody had to do anything, I just wanted to tell them where I was emotionally. They both thanked me for telling them and reminded me that I don’t need to bear this emotional pain alone. They sent lots of love & prayers, and I did some extra self-care. I got a grip again, and right now the sun is shining.

We are all human and what we’re doing involves a marathon of heartbreak and subsequent tears. Thank you for sharing here. Come back often. I am sending you love & prayers, Isac. You don’t have to be alone! An army of caregivers is beside you.

Pat6177

I hear you Isac. My DH has been doing this more and more. Who knows where the questions are coming from. I ask myself “did he really just ask that?” Then I get that now familiar sinking feeling in my gut. I’ve started keeping a log of some of these. And more recently, I’ll tell him something for the 2nd or 3rd time and he says “you never told me that”. He used to allow that he might have forgotten something. But now he instantly jumps to blaming me. I’ve learned (quickly) to keep my mouth shut when he says it. DH had kind of plateaued for awhile but the last 2 months I’ve been able to watch the decline.

ElCy

You are so right, my husband is pretty functional but everyday there is a little death of something new. It’s always a shock to me, always so sad. We have two small dogs that he loves dearly. I had to go out of town for one night, when I returned the water bowls were dry…Something he would never have done in the past. The hardest part is not being able to share with him the grief.

Isac

Thank you so much for all your replies and support. I look forward to continue to "talk" with y'all and gain insight and most of all learn to be patient with my husband and myself.

Daughter of a Marine

My DH, my guy, had a lengthy spinal surgery in May, 5 hours under anesthesia, and has not been the same since.  He was diagnosed with "mild dementia" about 8-10 years ago but since surgery, he has declined significantly.  I try not to be shocked at the severity of his memory decline, but I'm constantly fighting back tears.  This disease is a constant realization of loss - When I see him confused about where we hang the keys, where the microwave is, etc., I want to to dissolve and when I think about what it means for the future I thought we'd have - traveling, sharing the good, the bad and ugly of life, the memories of our years with our kids and grandkids, I grieve and realize that is all lost to him.  I realize that tougher times may well lie ahead but for now I'm trying to appreciate what we still have.  This site is invaluable in so many ways, enabling us to connect and walk this painful road together. As lonely as it feels, we are not alone.

Paris20

Isac, I agree that the hardest part of caregiving for spouses with dementia is emotional. Even with loathsome incontinence cleanups, the psychological trauma of what it represents lasts far longer than the mess itself. When my daughters told me that they feel that the father they knew is already gone, I was crushed. I knew they were right, but to hear those Daddy’s girls say it really hit me hard.

Isac, learn what you can about the disease but also come here for support. I’ve learned more from this forum than from anything or anyone else. Finding out about medications and fiblets, for example, allows my husband to stay home longer and gives me some respite from several of the more outrageous symptoms that had been totally out of control.

Isac

I checked replies again today and I realized there's so much more I'm feeling and not saying. I can so relate to all the posts. I will keep sharing and reading comments from other threads as well. Thank you, thank you, thank you.

Bob in LW

Pat, I have had the same experience with my SO.  Sometimes she will accuse me of not telling her something, when I had told her several times before.  I do not like to remind her of her memory loss problem because it depresses her, but sometimes I have to, in order to keep her from being in denial.  Most of the time I patiently answer her question without mentioning that she just asked it before.  I have also learned that, when bringing up any subject for discussion, I have to start at the very beginning, almost like explaining it to a child.  Otherwise, she won't know what I am talking about, although we had recently discussed it.