Every stage is hard

JoseyWales

Every stage along this journey has been hard. From not knowing what the problem was for years, to his anger and walking on eggshells, to obsessing over fixing everything, to the crying, the wanting to go home, the not knowing where to pee, the up ALL night.... and now memory care.

This isn't the worst stage, but it's harder than I ever imagined it would be. I imagined guilt. Yes, that's there. But whenever I feel guilty, I remember how it was before I placed him. I can't go back to that. So the guilt isn't long lived.

It's the sadness over what should be. I am now alone in this house we've lived in for 25 years. I see everything we did together. I see everything that he used to take care of. And I know he's living somewhere else, when he should be here. 

I walk into the memory care and see him there, alone and just up wandering. Alone. All alone. It's not that the staff there is ignoring him. I've seen them try to get him involved in activities. He's well taken care of. It's just that he isn't able to interact with others any more, so he gets up and slowly wanders away. Alone. He does it when I'm there, too, he will just walk away. And then just stand somewhere. All alone.

It breaks my heart. This disease is so cruel.

Mint

Josey I am so very sorry.  Know it breaks your heart, would mine too.

Joydean

Josey, wish I had words to comfort your heart. But I don’t believe that is possible, but I can and do offer prayers for you and your husband. You are so right about ever stage of this destroying disease. The sadness somehow is the worst. As caregivers we loose so much. Yes our loved ones loose but hopefully they don’t know, but we do. So in my opinion we grieve for them and ourselves and family. I pray you can find some peace. Take care of yourself.

Beachfan

Josey,

 I’d like to promise you it will get better.  Each day is a little better, trust me.  I could have written what you wrote, except for the drama leading up to placement.  Caring for my DH was grueling, but incident free for the most part.  

But the sadness is constant and overwhelming at times and, yes, it’s the worst stage.  I, too, come upon DH sitting alone, well fed, well cared for, seemingly content, but disengaged, totally apathetic, just alone.  I tell myself he was quiet, disengaged, and apathetic prior to placement and his total lack of interaction  with me makes it easier to come and go, but it’s little consolation.  I wonder what he thinks about, does he even think? 

I try to keep busy doing all the things I’ve not been able to do for the last several years and it helps stave off the sadness.  But eventually, I have to cross the threshold into this empty, quiet house.  It breaks my heart as well, and yes, this disease is beyond cruel.  Thinking of you.  

Ed1937

Josey, I'm sorry it has to be this way. People should just live their lives, then leave this world. It shouldn't be years of suffering for everyone involved.

markus8174

Josey,

Your post brought tears to my eyes.  I wish someone would tell us when it will get better. My DW has been in residential care for 2 years. I still can't cook because the last 3-4 years at home I worked every day to cook foods she loved. I can't sleep in our bed and end up spending every night dozing on the couch. Everything in our home reminds me of what my wife and I had and have lost. I can't drive past a store, or a theater, or a restaurant without breaking into tears because that was where we always...together. I have no life anymore and am just trying my best to be there for my DW for as long as she needs me. If my doctor told me tomorrow I had late stage cancer I feel I'd have to give her a hug for such good news. I still have to be a cat guardian for a while yet, and an advocate for my beloved, but those things mean less and less to me every day. If Putin is really insane, could he please launch off a few nuclear ICBMs and we can all meet up beyond the pale with our tears gone, and joy in their place, and our PWD healed and happy again.

David J

Josey, I am sorry. My wife  is also alone in MC, but at this point safe and secure. Best I can hope for.

Marie58

Josey, I agree. It's so hard and nothing about this ever seems even remotely easy. I get the 'alone' part. My DH is bedbound in MC, so he never leaves his room. He's alone unless a staff member is with him, or Hospice, or me, or an occasional visitor. It's so sad to see him alone.

JoseyWales

Thanks all. I'm glad there are others who understand what I'm feeling, although this is beyond what any of us should go through.

Yesterday I took his dog to see him. He loved his dog, I had trained our dog to find him when he'd wander away (never far, but sometimes it was hard to figure out exactly where he had gone, since we have about 10 acres and a few out buildings). Honestly, the dog was always with him, so it was more of me calling the dog and then looking for him in the direction the dog came from.

I expected at the very least a smile when he saw his dog and a reaction from our dog when she saw DH. But instead I got.... almost nothing. He had no reaction at all to the dog. We stayed about 1.5 hours and he pet the dog but really didn't interact much with her. When our dog saw him, she wagged her tail and greeted him... but it wasn't any more than she'd do for anyone else she'd greet. (She's a golden retriever, and a lover of people.)  I won't go through the hassle of bringing the dog again, although several other residents loved being able to pet her. 

So I guess content is about as good as he can do now. 

Marie - my heart breaks just thinking of your DH in a room all alone. I know intellectually that they don't know and are likely not upset by this. But it doesn't change how I feel. 

Markus - The bed was the one thing that I thought I'd never be upset to have all to myself. DH always hogged it, and I got left just a little slice on the edge. Those first few nights were so nice! But I find myself still sleeping on that little slice on the edge, and often waking up thinking he's next to me. But there's NO WAY I'm sleeping on the couch! I love my bed!

CStrope

Every stage along this journey has been hard. From not knowing what the problem was for years, to his anger and walking on eggshells

JoseyWales, this is where I'm at in our journey, the anger and walking on eggshells, and add in a lot of crying. (by both of us!)  

I just said to a friend of mine I'd like to hear stories of caretaker-survivors 2, 3, 4 years after their stories are over.  I want to know what lies ahead.

Marie58

JoseyWales wrote:

The bed was the one thing that I thought I'd never be upset to have all to myself. DH always hogged it, and I got left just a little slice on the edge. Those first few nights were so nice! But I find myself still sleeping on that little slice on the edge, and often waking up thinking he's next to me. But there's NO WAY I'm sleeping on the couch! I love my bed!

 

Josey, that's me too. DH has been in MC 19 months and I still sleep on my little slice. And I still wake up during the night and think he's there. I've even had that feeling that he's there while I'm reading in bed before I turn the light out. I love my bed too, especially on those exhausting days. 

Jean loves wildlife

Josey and all,

My heart breaks and tears come to my eyes reading all these stories. Prayers and love to all of you who care so much. My DH was just diagnosed in Feb. 2022 and I am still adjusting. I am following down the same path all of you have walked. Such a terribly cruel disease. 

Paris20

I’m also teary, reading these posts. They are heartfelt and true. My husband was diagnosed in 2015 and I agree that each stage has its own challenges. For those of us whose LO has anasognosia, our spouses will never know what’s happening. That’s a gift. For the spouse it’s a curse. The person whom we’ve been closest to in every way, the person we most want to talk to about this disease, is unavailable for any such discussion.

I can’t ask DH to fix anything anymore. I’ve learned a lot about home repair but I’ve learned even more about how to find good handymen and women. My husband could fix anything. Plumbing, electricity, painting, woodworking were all skills he learned growing up in his family’s hotel. He earned a PhD in accounting and finance. Now I have to do the taxes. He still thinks he’s in charge…of everything. I keep quiet about that but when he asked me where his wife was this week, I was mortified.

JoseyWales

Paris - my husband repaired all, too. He grew up on a mini farm of sorts, and his dad and older brothers made sure they taught him all kinds of valuable home/vehicle skills. We moved into our 100+ year old home and we remodeled. He did plumbing and electric, I learned drywall and other skills along with him. Once DH became impaired to the point where he couldn't do any repairs, we switched roles. I fixed, he held the flashlight. I learned so much from him over the years, but youtube is still needed. A lot. 

I still hold onto the "I'll fix it myself" mentality. But there are now some repairs here that need done that will require phone calls. I kept saying I'd make those calls once he was placed, but now I'm telling myself I'll make the calls once schools out for the summer. Since one call is replacement of a couple of windows that are in bad shape, I'm really dragging my feet. I'm actually going to call several window companies because I'm going to need quotes on the replacements. I had making phone calls. 

The other is a tree I need removed. I have a chainsaw, and I know how to use it.   But that darn tree is too close to an outbuilding. I'll probably have them down it and chop up the trunk into manageable pieces, then do the rest myself. Something to keep my busy.

Joydean

This thread is heartbreaking, but it’s also enlightening. As women the things we have learned to do. I knew how to do a lot of basic repairs. But mower or riding mower, I knew how to use them and I did, still do. Push mower is easy, the big one, didn’t have a clue. I had never used a jack, but I have learned. Chainsaw, same thing could use it but didn’t know how to replace the chain, can now. I do enjoy learning how to do these things, but the reason I’m learning is so very hard. I am trying to live with this saying. “Learn to accept what is,Let go of what was, Have Faith in what will be.”  No one said it is easy.