The Long Quiet
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.
My fur baby is a huge part of my emotional support team. He loves me unconditionally and is always so happy to see me when I come home. He will cuddle with me when I am lonely and sad. I really think he is an angel with fur instead of wings.
@ocdogmom What would we do without our dogs ?!
My husband has been diagnosed with dementia since 2015. He is probably at the stage 6 level and it seems almost weekly he loses the ability to function. The long periods of silence and the isolation are now my familiar and constant companions too. I am resigned to the fact that he and I are alone in this situation and that my Savior Jesus gives us strength and guidance every second of every day.
@luzzie God Bless you both.
Amen and my the Loving Arms of Jesus be always with you, girl!
@luzzie People like us, in the same situation also give you strength, in knowing we love you, we care, and we pray every day that God will help us all through this.
@kjc48 Our situation is not nearly as bad as it could possibly become, but it’s already hard. I am praying for patience and to be stronger than I believe I am. God help us.
I do hope all the hugs are warming your heart.
@saraemma3709 Thank you for your hugs and understanding. Everyday is a different challenge and I know that He gives me strength and guidance moment by moment. I expect absolutely nothing normal, nothing that resembles my husband before the dementia developed. That way I am not disappointed so much.
Bill. I am so very sorry to hear of your situation, and your beautiful writing nearly brought me to tears. My mother is still ambulatory but very unsteady, has difficulty feeding herself, and has terrible aphasia, or is also entering the phase of limited conversation. It is very unclear what she knows/understands due to the lack of speech. I do not know what "phase" this puts her in. I moved in with them to help out my Dad with arranging her care and running the house. It has been very tough as his lack of control over her illness seems to have made him a control in other areas, making it very hard for me at 53. He tries to discipline me like I'm 5. I am also concerned about him having cognitive impairment but it is hard to tell definitively yet. I was the first one to say aloud that something was wrong with mom and I think that was denial on the other family members' part. Stay strong. I am sorry you are in such an awful situation now. I for one, am here for you. Best, K