The Long Quiet

Posted by bill2001 @bill2001, Sep 1 6:46pm

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,
Bill2001

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Profile picture for lizzabeth @lizzabeth

Thank you for writing this. I noticed my husband's occasional lapses in memory in 2001. He has an advanced degree, is very bright, and he read a lot so the events were separated by several months. In the last 5 years I have watched my husband completely change. His mood can change in a second from being funny and silly to being mad and mean. He can go silent and pensive for an entire day. I have stopped asking what is wrong because he does not make any sense and often will say "well, you, you just" and that is all he will say. He tells me I have said things that I would never say because it makes no sense, but he insists that I have said it. I have always cooked as we did not like to eat out, but now he likes nothing I cook. A beef tenderloin is too tough (not) or he says he has never liked beef brisket when that has been one of his favorites. After he has had one of his silent days from anger, he will tell me he loves me several times but I have to say that a large part of the time I feel like he just does not like me. We are having our 56th wedding anniversary this week although he has talked about I know that he does not really understand. He is in total denial and has refused to go to the doctor until I finally forced him. He just had an appt. at the VA doctor and he was furious about it. He didn't speak to me the rest of the day. The following day he was happy and singing and today was a moody silent one brought on by my asking him to close the garage door.
People do not understand until they have been through this and I am not at the worst part yet.
We have had a great marriage and we have great kids and grandkids.
All I do is second guess my behavior and feel like I am not handling anything correctly.
You are lonely for normal conversation. You are in pain for your spouse. I have a difficult time sleeping and I have reached the point where I don't feel like I can leave him along for even 30 minutes to run to the store.
Anyway, thank you for your entry. I needed to see that others are in the same situation and having many of the same feelings I am having. Thank you again.

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@lizzabeth I am not in same situation as you but I know it is coming. My husband of 45 years is having memory issues and I know it is only going to get worse. He will ask me numerous times to repeat things. Our conversations are non existent. We can ride in the car for 2 hours and he will not say a word. This is by far the most difficult thing I have ever had to deal with. Thankfully he is not moody, but I am. It is just so sad. He is a retired Dr. and I just miss my old husband.

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I gonna jump in here because the 2 entries I've just read really relate to conditions we might all be familiar with. The circumstances may differ but the struggle is pretty much the same.

1st, expressing these observations, perceptions & feelings is really important. Other people here are experiencing the stresses any medical condition causes whether in yourself or a loved one.

It is really difficult and best shared whenever possible. That's why your writing here is so helpful for us all. Sometimes there are groups nearby and if not online meetings can help those looking others. Thanks for sharing some insight into your experiences. I hope you'll find some helpful input here. Take some time to take care of you, you matter too. ♥️ Air Hugs.

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I found this in the list of subjects, meetings & groups here on Mayo Clinic. Once a wk for 1 hour.

Sounds really supportive.

Caring for the Caregiver Support Group meets weekly on Thursdays from 12-1 p.m. Arizona time (Find your time zone.)
This is a group specifically for those who care for a loved one- regardless of their medical issue. This group was formed as a way to connect, share and receive support from others navigating the often overwhelming journey as caregiver.
All caregivers welcome. The group is for caregivers, so we respectfully ask that patients not attend. Currently the group meets virtually via Zoom.
To register and get the Zoom invite, contact:
Katie Lespron MSW, LCSW 480-342-4005
To connect with others like you between monthly meetings, join the online discussions in:
• Caregivers forum
• Caregivers: Dementia forum
Location
Online
Contact

Katie Lespron, MSW, LCSW
Email: lespron.katherine@mayo.edu
Phone: +480-342-4005

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