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.

joedeb | @joedeb | Oct 25 10:16pm

Thanks for sharing your story Bill. My wife is on year 3 of lewy body dementia. I don' know what stage she is, but she is getting weaker and sleeps more. She just fell and broke her elbow a week ago. I first thought it was all my fault for not catching her but now think she just has entered the next phase. We are still able to get in the car and go for rides. We know of the long silence. It causes us to want to get out of the house. You wake up the next morning wondering what new will happen today. My wife woke up this morning sleeping on her side. I don't ever remember her sleeping on her side. I think it has something to do with her cast. We had a great day yesterday celebrating her 74th birthday. I made a chocolate cake and lasagna. We had a card shower and she got 30 cards and 3 bouquets of flowers. The family is now gone and the great quiet has returned.

sivad | @sivad | Oct 26 10:42am

Have just read that small doses of Lithium can help with this problem does anyone have any experience of using this
Sivad

pb50 | @pb50 | Nov 2 8:06am

In reply to @sivad "Have just read that small doses of Lithium can help with this problem does anyone have..." + (show)

@sivad if you search for Lithium Orotate on these boards you will find a robust discussion about it. There are a number of us taking up to 5mg a day of that as a health supplement - maybe it helps deter Alzheimer’s, maybe not. But at that dose the side effects seem to be minimal if you keep your fluid intake up, since it can concentrate in the kidneys if you don’t. It does seem to have positive impact on mood if nothing else.

sivad | @sivad | Nov 2 8:44am

In reply to @pb50 "@sivad if you search for Lithium Orotate on these boards you will find a robust discussion..." + (show)

@pb50 Thank you for response. i may have to contact my GP regarding this. Kindest Regards Sivad

bill2001 | @bill2001 | Nov 3 3:05pm

Greetings All,
I appreciate all of your heartfelt messages and suggestions.

I have made the (stubborn) decision to keep my dear wife at home as long as I can. The cost of care is unmanageable if I want to have some semblance of a retirement someday. I am too young (early 60s) to lose out on that someday, yet too old to start saving for retirement all over again. I do realize that at some point I may have no choice, but that's not today.

Ironically, placing my wife into care would not resolve this horrid loneliness. I can continue to be lonely for free.

I do also realize that I am blessed to simply have the physical ability to care for my dear wife this long. I know that many other caregivers make the difficult decision to place their dear spouse earlier that I have (so far). I am 10 years into this.

I pray for strength for all of you and wish you all peace.

Love Bill2001

Colleen Young, Connect Director | @colleenyoung | Nov 5 8:23pm

In reply to @wifecaregiver51 "My God, I hear you and am experiencing much of the early stages of all the..." + (show)

@wifecaregiver51, welcome. The silence can be lonely even though you're not alone. You might appreciate exchanging with other members in this journal writing "club" in this discussion:
- Journaling - The Write Stuff For You?https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/

Journaling is a great way to vent and express your thoughts. Do you also have people who visit or call to have conversation and interaction sometimes?

wifecaregiver51 | @wifecaregiver51 | Nov 5 9:02pm

Thanks for your message,
Colleen. Yes, my children and friends check in, but closest are most far away. Yes, I’d be interested in how the Journaling Group works. I will follow the link you sent. Thank you.

tself | @tself | Nov 9 2:54pm

Hello Bill
I was reading your August 2023 post and then your latest.
No one can tell you what to do - I had so many people weighing in whether I wanted it or not. In the end you have to live with yourself and that is always my ruler.
I did put my LO in a facility and per your 8/23 post, you have valid points.
The cost is burdens because they will charge you for everything and tell you they will do stuff and then, not. I hear the folks that have had fabulous experiences and I interviewed many before I chose the one that I did.
Things I like:
My LO has relationships with other residents even though it is a memory care unit with 27 folks.
I can sleep with both eyes closed
I know if there is an emergency I am not the only person to handle it
I visit everyday (my choice) and I am happy that he goes to activities the center offers... something I was too burned out to want to do
The not so good:
It's a petri dish of people getting sick - I caught both covid and pneumonia there
The cost is ridiculous at $11,000 a month and he is spending down...how long will he live? Will I be able to cover it all with the money he has? It is worrisome.
Some residence have a lot of issues and they can be front and center at times.
The food is just ok with a surprise decent meal.
The assisted living folks are always treated better than the memory care floor. They have better choices for dining, nicer rooms and more options to engage while the people who pay the most are the memory care residents.
I could go on...
Last night I called him after a visit to the ER because he accidentally used hair gel for his dentures (no comments please I've handled it) and I didn't hang up right away. I listen to him talking to residents, engaging with their circle of people...he seemed happy. This was important because he began to isolate himself from people living alone. I came everyday to put out fires but now, I can take him out to dinner, or a walk by the river...
Either way I support you Bill just remember to include yourself in the care. Sending you lots of positive energy and to your wife.

cide8620 | @cide8620 | Nov 10 7:33am

Your description resonates with me and my situation in our home. I had to retire last year because I couldn't leave my spouse alone for more than a few hours. I'm curious, how are you able to work outside the home?
This is so difficult on so many levels.

Becky, Volunteer Mentor | @becsbuddy | Nov 10 6:31pm

In reply to @cide8620 "Your description resonates with me and my situation in our home. I had to retire last..." + (show)

@cide8620 Welcome to Mayo Clinic Connect! I’m really glad you joined this group because you have such a difficult job at home. Does your husband have dementsia? Is there a daycare program that he could attend? I think I’d better stop and let the experts give their advice.