The Long Quiet

Bill_2001 · September 1

Dear Friends,

I am quickly approaching ten years as a caregiver for my dear wife with late Stage 6 dementia. Alzheimer’s and dementia have long been known as The Long Goodbye because of the painfully long duration of the disease. No one knows how long their journey as a caregiver will go on, but I never imagined myself being locked into it for a decade.

Looking back, my long journey as a caregiver has gone through several phases. They roughly represent the stages of the disease itself. I have memories of 2015 and 2016 when my wife was still self-sufficient and self-aware; I have identified these time periods as Stages 2 and 3. Life was still mostly normal, with occasional signs that “something is wrong here” every now and then.

My existence now is best described as The Long Quiet. It is made up of years and years of no visitors, no conversations with my wife, very few phone calls, and very limited outings. The effort it takes to “go out and have fun” has long since ceased to be worthwhile. Most of my friends and family have moved on, except for the occasional phone call to check in.

Between feeding sessions, bathroom visits, showers, and diaper changes, my wife sits practically catatonic on the sofa “watching” television. Sometimes I play some music to brighten the mood, even though her response to music is also fading in this late dementia stage. When the television is off and the music stops, the quiet in this house is deafening.

There are no visitors. No laughter. No conversations. No intimacy. No smiles. No telephone ringing. No invitations. No communications. No response if I ask my wife a question or try to engage her. This Long Quiet phase has been going on for about two to three years, roughly her time in Stage 6.

Do you remember when you were a kid and you would give someone “the silent treatment” if you were angry with them? Caregivers are on the receiving end of the silent treatment for years on end. Marriages end when communication stops, but we must endure it because of “the disease.” Our suffering is not just changing diapers and lack of outside activity; we are persecuted by the disease day and night by this god-awful Quiet.

This is why I do not post here as often as before. Nothing is changing here. There is only silence for years on end. If my wife were well, I may have retired by now. There is no reason to retire now, as work provides some measure of conversations and normalcy.

Stay Strong My Friends,

Bill_2001

persevere · September 1

Hello Bill, I recently joined this forum. I posted my summary a week ago or so but the wife was diagnosed in 2019. She’s very far along as I assist her with everything. I thought your cavalry post was spot on and I am going through that transition now. No one’s coming to help me. Just take what I can get. I do have a question for you though. My wife is now in what I call the jabbering stage. Constant, unending jabbering basically from the time she wakes up till she goes to bed. And now even through the night sometimes. Did you experience this? It’s like a Chinese water torture. Is the quiet stage worse than this?

Bill_2001 · September 2

Hi Persevere,

Yes, my wife went through the jabbering phase, around Stage 4-5. Try playing music to give her an outlet to jabber/sing; music helped me get through it. As difficult as that was, the quiet, catatonic stage is no better. These behaviors all arrive as a sudden, scary new issue. I do my best to research the disease progression in order to prepare but reading and experiencing are two very different things indeed.

My wife is also losing agency, by which I mean she does not initiate anything she needs to do (eat, drink, etc.). This seems consistent with the Long Quiet I described, as I must prompt her and help her with even the most basic human functions at this point. Although I have acclimated, it is VERY depressing. My wife was once a vibrant, intelligent, active woman; this disease has decimated her mind so much that her very essence has gone missing.

If there is a bright spot, it is that all of these scary, annoying, and difficult phases/behaviors are temporary. As the disease progresses, you will begin to notice past issues have morphed into a new set of symptoms.

All the best, Bill_2001

BikingOldMan · September 2

Hello Bill, Thank you for your post - I am new to this forum, and reading your post made me think back to when I was working and would come home after being away and wonder what DW was doing while I was gone. That was 6 or 7 years ago that I was beginning to wonder about the "little, subtle changes" that were happening. The vibrant, outgoing and busy DW seemed to be disappearing. I've not been 10 years, don't know if I'll ever get there. These are tough times. Thanks again for your post. BikingOldMan

persevere · September 2

https://alzconnected.org/discussion/comment/252440#Comment_252440

yes, my wife too was very active and vibrant. She had her own real estate company and was a connoisseur party and wedding planner. Seems like they all go through very similar stages but at different times. She too does not initiate anything anymore. Occasionally she implies she’s thirsty but that’s about it. I find too that as much as I’m suffering through this I still wish I could figure out how to bring some humor or satisfaction to her day.

SDianeL · September 2

Bill, I think of you often. I think The Long Quiet is so heartbreaking. The realization that your loved one can no longer communicate coupled with friends and family not calling. You always know how to say what we’re all feeling. 💜

Biggles · September 2

Bill your two articles The Cavalry’s Not Coming and The Caregiver’s Brain have been inspirational articles for me. They are printed out on the fridge, I have copied them and passed them on to my Phsyc, my very good friend who lives 1500kl from me whose husband died after a short illness, she inturn has past them on to a friend whose husband has dementia. They have given me strength and courage, none of the medical profession can match your writing with experience and compassion. The loneliness and aloneness you have conveyed in this last post is so sad. My dearest DH of 54 years is almost non verbal, non inspirational and totally dependent. I sometimes wish we on this forum lived closer. I am in Australia, it is such an isolating disease no one wants to share your non-life. Please keep writing on this forum, selfishly I need this communication every day. Please know that you are in my thoughts.

White Crane · September 2

Bill, I'm sitting here with tears in my eyes after reading your post. Thank you for your honest sharing. I think of you often and have been wondering how you were doing. Even though my husband is now in MC and I am not actively taking care of him, I am still actively grieving and experiencing a sadness that is too deep for words. Stay strong my friend.

Brenda

Metta · September 2

Bill, You have been here for so long, and cared for your DW lovingly. I have read many of your inspiring posts, including this one. The long quiet it is… A reminder for us all to stay strong…

CindyBum · September 2

Oh dear Bill. You do write some wonderfully helpful posts. I'm so sorry you're a decade in.

We're still in the jabbering phase here, but I feel the Long Quiet coming as my DW gets more and more frustrated with trying to make sense. I keep trying to remind myself that I will likely miss the jabbering and can imagine the quiet will be very difficult for me to manage as well.

Big hug to you.

Dio · September 2

Bill, it's always a pleasure to hear from you and read your posts. You've nailed the painful journey so eloquently. What you described I had gone through with my DH in a fast-tracked span of 2 years before I had to place him in MCF. But what happened in MCF, after what I thought was the end of him, turned him around with the help of the right combo of meds. With so much guilt surrounding placement, I'm grateful DH got reset. He's one of the lucky few. This return to normal is also eating me up paradoxically. There's no escape. I shouldn't but I do constantly worry with anticipation when the next shoe will drop.

Palmetto Peg · September 2

Bill, your posts are always so insightful and right on point. Although my DH is now in MC, he becomes more silent each day and it is so depressing. He stares at something I can't see, and only verbalizes occasionally. We, too, are about 10 years in. I couldn't keep him at home with me because he was so aggressive, and by that point I was really too old to even want to go back to work. Keep inspiring us with your wise words. They mean so much to all of us out here living the hell that is dementia. We are all earning our wings every day we fight this insidious disease! My sincerest thanks for you and your wisdom!

The Long Quiet

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